General Health Care Resource Page
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More Web-based data sources ProMED-mail, www.promedmail.org Global Public Health Intelligence Network (GPHIN), www.phac-aspc.gc.ca/media/nr-rp/2004/2004_gphin-rmispbk-eng.php HealthMap, www.healthmap.org MediSys, http://medusa.jrc.it EpiSPIDER, www.epispider.org BioCaster, http://biocaster.nii.ac.jp Wildlife Disease Information Node, http://wildlifedisease.nbii.gov H5N1 Google Earth mashup, www.nature.com/avianflu/google-earth Avian Influenza Daily Digest and blog, www.aidailydigest.blogspot.com Google Flu Trends, www.google.org/flutrends Google Insights for Search, www.google.com/insights/search DiSTRIBuTE, www.syndromic.org/projects/DiSTRIBuTE.htm GeoSentinel, www.istm.org/geosentinel/main.html Emerging Infections Network, http://ein.idsociety.org Argus, http://biodefense.georgetown.edu Sample health-related social-networking sites Physicians, www.sermo.com Patients, www.patientslikeme.com Everyone, www.healthysocial.org |
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At least three-quarters of all Internet users look for health information online, according to the Pew Internet and American Life Project; of those with a high-speed connection, 1 in 9 do health research on a typical day. And 75 percent of online patients with a chronic problem told the researchers that “their last health search affected a decision about how to treat an illness or condition,” according to a Pew Report released in August 2008- “The Engaged E-Patient Population.” Reliance on the Internet is so prevalent, said the report’s author, that “Google is the de facto second opinion” for patients seeking further information after a diagnosis. In a 2008 study, a report in the journal Cancer looked at 343 Web pages about breast cancer that came up in online searches. The researchers found 41 inaccurate statements on 18 sites — an error rate of 5.2 percent. Sites promoting alternative medicine were 15 times as likely to offer false or misleading health information as those sites that promoted conventional medicine. Google, however, can lead patients to miss a rich lode of online resources that may not yield to a simple search. Sometimes just adding a word makes all the difference. Searching for the name of a certain cancer will bring up the Wikipedia entry and several information sites from major hospitals, drug companies and other providers. Add the word “community” to that search, Ms. Fox said, and “it’s like falling into an alternate universe,” filled with sites that connect patients. Benjamin Heywood, the president of PatientsLikeMe.com , a site that allows patients to track and document their conditions and compare notes with other patients, says that with a growing online population, it becomes possible to research highly specific conditions — say, being a 50-year-old with multiple sclerosis who has leg spasms and is taking a certain combination of drugs. Medical sites can be grouped into five broad, often overlapping, categories: GENERAL INTEREST Sites like WebMD (webmd.com), Discovery Health (health.discovery.com) and The New York Times (nytimes.com/health) provide information about disease, news and lifestyle advice, as do medical institutions like the Mayo Clinic (mayoclinic.com). MEDICAL RESEARCH SITES offer access to the published work of scientists, studies and a window into continuing research. Examples include PubMed (http://www.ncbi.nlm.nih.gov/PubMed) from the National Library of Medicine; clinicaltrials.gov, which tracks federally financed studies; psycinfo (apa.org/psycinfo), with its trove of psychological literature; and the National Center for Complementary and Alternative Medicine (nccam.nih.gov), the government’s registry on alternative medicine research. PATIENT SITES for groups and individuals are booming — so much so that they are increasingly used by researchers to find patients for studies. These include the Association of Cancer Online Resources (acor.org) and e-patients (e-patients.net), as well as Patients Like Me and Trusera (trusera.com), which provide a bit of Facebook-style social connectivity for patients, along with the ability to share their stories in clinical, data-laden detail. DISEASE-SPECIFIC SITES focus on a particular condition and are often sponsored by major organizations like the American Heart Association (americanheart.org), the American Cancer Society (cancer.org) and the American Diabetes Association (diabetes.org). But smaller groups can put together extensive resources as well, with sites like breastcancer.org and Diabetes Mine (diabetesmine.com), which calls itself the “all things diabetes blog.” WEB TOOLS These sites help
people manage their conditions — for example,
sugarstats.com for diabetes,
Destination Rx (drx.com)
for comparing drug prices, and
YourDiseaseRisk.com, a service of
the
Washington University school of
medicine that helps patients determine their risk for various problems. CERVICAL CANCER LINKS
Articles
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INFORMATION TO MY PATIENTS ABOUT [CABG] CARDIAC BYPASS SURGERY [from 9/9/04 WSJ] These statistics should be a starting point for patients who need to choose a hospital and surgeons for cardiac bypass[CABG]. Some companies are collecting bypass data based on information from Medicare, which accounts for about 45% of such procedures. In a pilot project with Premier Inc., a nationwide organization of not-for-profit hospitals, about 280 hospitals will report more detailed information about bypass surgery care, including whether aspirin was prescribed at discharge, whether the surgery was performed using the internal mammary artery (considered more durable than a vein graft), whether doctors followed guidelines in antibiotic administration before and after surgery to prevent infection, and whether there were postsurgical complications such as hemorrhage. Perhaps though, the most important thing is that you have not only a technically competent surgeon in a high volume hospital but one that you can talk to and who knows how to communicate. http://www.healthgrades.com/ Volume and mortality data on nearly 5,000 hospitals that submit data to Medicare http://www.myhealthfinder.com/ N.Y. State Hospital Report Card, with a quality indicators section on coronary bypass that provides volume and risk-adjusted mortality rate data by hospital and surgeon http://www.phc4.org Pennsylvania's Guide to Coronary Artery Bypass Graft Surgery examines the results of more than 22,000 surgeries performed in the state in 2000 http://www.healthscope.org/ Pacific Business Group on Health site has voluntary data from California hospitals on surgery volumes and mortality rates; not all hospitals in state participate http://www.sts.org/ Society of Thoracic Surgeons patient information center includes information on the procedure and what to expect after surgery |
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| Established Health Care Links |
Adam
This popular consumer health site grew out of series of CD-ROMs for the medical
education market. It includes sections on men's, women's and children's health,
as well as diet and nutrition, first aid and mental health. One of the
highlights is a "Health Illustrated" section featuring full-color
medical artwork.
AMA
Health Insight
Launched in 1997 by the American Medical Association, this site provides easily
understood information for consumers and includes the capability to search on
line for physicians, hospitals and medical subjects. All information provided
(including links) is approved by an editorial board consisting of physicians,
pharmacists and scientists.
American Academy of Family
Physicians
Though the AAFP created this site for its 88,000 members, you don't have to be a
member to use it. Anyone can access full text articles from the past few years
of American Family Physician.
American Medical Association
This site covers a lot of ground - from medical news and politics to health
policy and public health to science. Much of the information is open to the
public, but some is for the AMA's 295,000 members only.
Better Health
Now run by mega women's site village, the site is an outgrowth of one of the
first on-line health communities, the Better Health and Medical Network,
launched on America Online in 1993. It's now one of the Web's top-traffic health
sites, featuring magazine-type health coverage, as well as special interest
communities, support groups and database of articles by experts on a wide range
of conditions.
CancerNet
For cancer research, the National Cancer Institute's CancerNet Web site is hard
to beat. The site provides access to PDQ, NCI's comprehensive cancer database:
CANCERLIT, NCI's bibliographic database: cancerTrials, NCI's clinical-trials
information center; as well as news, fact sheets, and other resources.
Information is "reviewed regularly by oncology experts and is based on the
latest research."
Center for Disease Control and
Prevention
The federal agency offers statistics, news, consumer fact sheets and other
resources on diseases, as well as recommendations for overseas travelers. Many
doctors use this site to find current immunization recommendations and health
alerts for patients traveling abroad. The full text of Morbidity and Mortality
Weekly Report, current and past issues, is available at the CDC's site, along
with a wide range of scientific data, health statistics, and laboratory
information.
CenterWatch Clinical Trials
Service
Contains lists of clinical trials of experimental treatment for many diseases.
It is searchable by disease categories and geographic area. All of the trials
listed accept new patients.
Hardin MD: Hardin Meta Directory of Internet Health Sources
Hardin Meta Directory - Psychiatry/Mental Health
HealthAtoZ.com
This is a family oriented site with personalization features including "My
HealthAtoZ," which lets users customize the home page with news and
features targeted to their interests. The site also just added
"E-Mate," an interactive calendar and organizer that lets families
store and manage personalized information on line.
Healthfinder
This is the government's directory of authoritative health information,
featuring a variety of menu lists with links to online journals, medical
dictionaries, minority health and prevention and self-care. Information is
obtained from U.S. government agencies; national voluntary, nonprofit and
professional organizations; and academic institutions and libraries.
HIV InSite
A project of the University of California at San Francisco AIDS Research
Institute, this site is designed as a gateway to in-depth information about
various aspects of HIV/AIDS. It provides numerous links to authoritative sites,
including a directory by the American Bar Association of legal resources for
people with the AIDS virus.
MedHelp International
An independent, nonprofit organization founded by two people who met in an
online medical support group in 1993, this site focuses on resources for
patients and their families.
Medical Matrix
This site is targeted primarily to U.S. Health care workers, but medical
librarians say they also recommend the site to motivated consumers who take the
time to familiarize themselves with medical terminology. It has several
strengths: It ranks Internet sites, it has links to resources that are peer
reviewed, and its entries are annotated.
MedicineNet.com
This site provides health news and resources that are "100%
doctor-produced." The team has put together a data-base with information on
400 diseases and treatments.
Cite Health
The popular information site, organized by medical specialties, is geared to
physicians, who can receive customized home pages on medical topics in their
areas of interest.
National Institutes of Health
The umbrella site of the government's health research institutes includes
information about consumer publications, toll-free numbers for medical
information and Medline Plus, the National Library of Medicine's new
consumer-oriented site. It contains a selected list of quality resources on
common diseases and conditions, as well as citations with abstracts to 9 million
research articles published in 3,900 biomedical journals.
NOAH: New York Online Access to Health
This is a collection of state, local and federal resources selected by editors
with consumers in mind. Its authoritative sources make it a favorite of medical
librarians, and it's one of the few sites available in English and Spanish.
Health topic areas include definitions, care and treatment, and list of
resources.
Oncolink
A resource of the University of Pennsylvania Cancer Center, this site provides
information on the various forms of cancer. The site can be searched a number of
ways and includes menus listed by disease or medical specialty, cancer causes,
screening and prevention, clinical trials, and global resources for cancer
information.
PDR.net
Created by Medical Economics Company, publisher of this magazine and other
health care periodicals and directories. PDR.net offers the full-text
"Physician's Desk Reference," including all the updates. "Having
access to the PDR on-line is very helpful."
ThriveOnline
It was founded in 1996 as a joint venture between America Online and Time.
ThriveOnline takes a magazine-style approach, with linked subsites on areas of
particular interest to women: medicine, fitness, sexuality, nutrition, weight
and "serenity" (stress reduction and personal exploration).
YourSurgery
This site uses photos, diagrams and animation to detail common surgeries and
their risks.
WebMD
This site, with sections geared to both doctors and consumers, offers medical
news, personalized health information and support communities.
I receive many
requests in my private medical practice for [written] information about a variety of gastrointestinal and liver
diseases. The following are the Links to which I refer my own private patients.
They consist of Gastrointestinal Organizations offering information to Patients,
Physicians, and Gastrointestinal and Liver Disease Support Groups
Gastrointestinal
Organizations Offering Patient Information
Alagille Syndrome
Alliance
Information of Alagille syndrome, including diagnosis, testing, and
treatment; support network for children, their parents, and others.
Alpha-1 Foundation
Educational materials for physicians and the public about testing for
Alpha-1 Antitrypsin Deficiency and the treatments; Education Materials Working
Groups; Research Registry Update
American Association for
the Study of Liver Diseases
Information on practice guidelines; journals available online; membership
directory
American College of
Gastroenterology
Publications for patients on common gastrointestinal problems.
American Dietetic
Association (ADA)
Monthly professional journal; monthly newsletter; books and other resources
for consumers and professionals.
American
Gastroenterological Association
Publications for patients on common gastrointestinal problems.
American
Hemochromatosis Society Inc. (AHS)
Variety of information on hemochromatosis (HH), including DNA screening for
HH and pediatric HH.
American Liver
Foundation (ALF)
Information about liver wellness, liver disease, and prevention of liver
disease; audiovisuals, seminars, and training programs; advocacy and research;
news and events.
American
Porphyria Foundation
Informational brochures about porphyria; referrals to porphyria treatment
specialists; self-help services for members.
American Society for
Gastrointestinal Endoscopy
Publications for patients on gastrointestinal endoscopy and digestive
health; clinical guidelines.
American Society
for Parenteral and Enteral Nutrition
Educational opportunities for nutrition support practitioners, including an
annual conference, audio-teleconferences, self-assessment programs, postgraduate
courses, publications (practice standards, clinical guidelines, and nutrition
support clinical pathways), research programs.
American Society of
Abdominal Surgeons
Continuing education program for physicians in abdominal surgery.
American Society of Colon
and Rectal Surgeons
Publications for patients on colon and rectal diseases; listing of
board-certified colorectal surgeons; material on Colorectal Awareness Month;
residency programs; links to affiliated organizations.
Centers for Disease
Control and Prevention (CDC), Hepatitis Branch
Publications for patients on hepatitis A through E; slide sets, videos, and
posters; continuing education credited program.
Celiac Disease Foundation
(CDF)
Telephone information and referral services, information packets, and
special educational seminars and general meetings.
Celiac Sprue
Association/USA Inc.
nformation sheets, new-patient packet, handbook.
Crohn’s & Colitis
Foundation of America Inc.
Information on all aspects of Crohn’s disease and ulcerative colitis,
including emotional factors and issues specific to women and children.
Cyclic Vomiting
Syndrome Association (CVSA)
Promotes and facilitates medical research about nausea and vomiting;
increases public and professional awareness; patient education publications.
Food Allergy Network
& Anaphylaxis Network
Coping strategies for patients; booklets; videos; cookbooks; and
special-alert mailings informing members of product information, including
ingredient changes, recalls, or packaging mishaps.
Gastro-Intestinal Research
Foundation
One-page quarterly newsletter on issues in gastrointestinal research and
health available by postal mail or online.
Gluten Intolerance Group
of North America
Materials on the gluten-free diet (consistent with the American Dietetic
Association guidelines); summer camp for children; annual education conference;
quarterly newsletter; foreign-language materials; fact sheets; videotapes;
counseling and access to gluten-free products; cookbooks and resource books.
Hepatitis B
Coalition/Immunization Action Coalition
Publications: NEEDLE TIPS and the
Hepatitis B Coalition News and Vaccinate Adults; email news service (IAC Express); foreign-language
brochures and materials for various ethnic populations; print materials for
clinic staff; videotapes and posters.
Hepatitis B Foundation
Updated “Drug Watch” list of compounds under development of chronic HBV;
liver specialist directory; printable brochures and newsletters; advice for
carriers, adoptive parents, and health care providers; interactive email;
general hepatitis B information; new language chapters coming soon.
Hepatitis Foundation
International (HFI)
Audiovisual materials for the public; database of hepatitis support groups;
telephone support network for patients; foreign-language materials; educational
materials (posters, brochures, videos, and books); a workbook about the liver
for children.
International Foundation
for Functional Gastrointestinal Disease (IFFGD) Inc.
Information on gastrointestinal motility disorders in infants, children, and
adults; publications on functional gastrointestinal disorders.
Intestinal
Disease Foundation
Information, guidance, and support for people with chronic digestive
illnesses.
Iron Overload
Diseases Association Inc. (IOD)
Counseling for patients with hemochromatosis and their families; physician
referrals; educational materials including a booklet, newsletter, and an
information brochure.
National Association for
Continence (NAFC)
Information on incontinence, including books and audiovisuals.
National
Organization for Rare Disorders (NORD)
Helps people with rare “orphan” diseases and the organizations that
serve the; NORD Resource Guide; Physicians
Guide for Rare Disorders.
North American Society
for Pediatric Gastroenterology, Hepatology, and Nutrition (NASPGHAN)
Information for the public on numerous pediatric gastrointestinal, liver,
and nutritional disorders; a directory of pediatric gastroenterologists in the
United States and Canada; educational activities for physicians.
Oley Foundation for Home
Parenteral and Enteral Nutrition (HomePEN)
Educational materials on home parenteral and enteral nutrition, including a
nutrition complication chart and nutrition choices video; family network;
toll-free consumer networking; video library of annual conference presentations.
Pediatric/Adolescent
Gastroesophageal Reflux Association Inc. (PAGER)
Literature on pediatric gastroesophageal reflux disease (GERD) and related
disorders; support for patients, their families, and the public; hereditary GERD
study.
Pediatric Crohn’s
& Colitis Association Inc.
Information on medical, nutritional, psychological, and social factors in
pediatric and adolescent Crohn’s disease and ulcerative colitis.
Reach Out for
Youth With Ileitis and Colitis Inc.
Educational and emotional support for patients and their families;
educational seminars and quarterly newsletters; hotline.
Simon Foundation
for Continence
Assistance and support for those with urinary incontinence; educational
materials including a book on managing incontinence.
Society for Surgery of the
Alimentary Tract (SSAT)
Forum for information exchange among physicians specializing in alimentary
tract surgery.
Society of American
Gastrointestinal Endoscopic Surgeons (SAGES)
Publications for patients about gastrointestinal endoscopy, laparoscopy, and
minimal access surgery.
Society of Gastroenterology
Nurses and Associates (SGNA)
Provides members with continuing educations opportunities, practice and
training guidelines, and information about gastroenterology.
TEF-VATER International
Information and support for families of children who have esophageal atresia,
tracheoesophageal fistula, and the VATER association. VATER is a group of birth
defects that affect the spine and blood vessels; the anus and rectum; trachea;
esophagus; kidneys, ureters, and bladder; radial arm defects; and many other
defects.
United Network for Organ
Sharing (UNOS)
Publications for patients on transplantation; UNOS member directory.
United Ostomy Association
Inc.
Volunteer-based association providing education, information, support, and
advocacy for people facing intestinal or urinary diversions.
Weight-Control
Information Network (WIN)
Science-based health information materials on weight control, obesity,
physical activity, and related nutritional issues.
Wilson’s Disease
Association
Communications and support network for individuals affected by Wilson’s
disease; patient information; referrals; meetings.
Wound, Ostomy, and
Continence Nurses Society (WOCN)
Professional, educational, and clinical resource materials for people with
wounds, ostomies, and incontinence.
ON-LINE CLINICAL CONSULTING SERVICES
Ask Dr. Weil
One of the first and most popular sites catering to those with an interest in
holistic health and herbal medicine, Ask Dr. Weil is built around health
questions answered by alternative medicine pioneer Andrew Weil, who runs a
program in integrative medicine at the University of Arizona in Tucson. Visitors
can ask questions by filling out a form or read articles by Weil and others.
Ask the Doctor / Parentsplace.com
DrKoop.com
With Dr. Koop himself as chairman and spokesman, the site claims six million
individuals visits since its launch nearly a year ago. It offers more than 120
chat groups, as well as advise from physicians Nancy Snyderman, a popular radio
and television personality.
Drug Infonet
This independent unsponsored site provides a range of valuable and clearly
organized information, including details from package inserts and consumer
pamphlets for many drugs, links to manufacturers' sites, an "Ask the
Expert" section and other resources.
Go Ask Alice / Columbia University Health Services
InteliHealth
A joint venture of Aetna U.S. Healthcare and the respected Johns Hopkins
University Hospital and Health Care System, this award winning news site also
rounds up the latest tools and references (dictionaries, database indexes,
hospital locators), has experts check them out and puts them in a
reader-friendly package.
Mayo Clinic Health Oasis
Is one of the oldest and best-known consumer sources of health information.
Editors are physicians at the Mayo Clinic, and an emphasis is placed on
providing timely information, with revision dates noted. Look in the library
section for an extensive list of reference articles written by Mayo Clinic
staff.
MediConsult.com
This site, run by an independent consumer-health marketing company, provides
peer-reviewed educational materials, support groups and an innovative "MediXperts"
service, which provides users with tailored, confidential information from top
specialists in North America. You submit your questions, and an expert sends a
response in two to five days.
Links to Second
Medical Opinions for a fee.
Often in my private
medical practice I’m asked to render a second medical opinion only by E-Mail
and without being shown any previous medical records. I do not offer such E-Mail
services. But there are several excellent groups that are designed to do this.
This group of links to second
medical opinions are not free of charge. The fees may be charged by these groups
are listed next to their web site. Perry Hookman MD nor the Web-site of Perry
Hookman MD, PA has no direct or
indirect financial relationship with any of these second medical opinion web
sites or any other links on this entire web-site.
If you want an Internet second opinion, you will almost always need to tell your original doctor, because patient-privacy laws, as well as state laws governing where doctors practice medicine, require Web sites to obtain medical-release forms from the first physician. But second opinions are a corner-stone of good medicine, and your doctor shouldn't make you feel uncomfortable about seeking one.
LEGAL DISCLAIMER:
The information offered here on this web site is offered as a public service
"AS IS" with no representations or warranties with respect to accuracy
of editing, attribution, verification and completeness of
this information. Any statements or opinions based on any links, are
not guaranteed, endorsed or sponsored nor are meant to constitute medical
diagnosis or advice by Perry Hookman MD. Nothing here on this web site should be
acted or relied upon without independent review and verification. The reader
expressly assumes all risks in using this information. We are not responsible
for errors or omissions or liable for any damages incurred as a result of use or
reliance upon this information.
Patients using a second-opinion Web site which is not directly affiliated with a medical institution, such as mdexpert.com, should check to be sure the site lists the names of the experts it uses.
Patients who go to eyecance.com, for instance can easily learn that the site is created by New York ocular oncologist Paul Finger.
Researching a Health Care Provider
These independent organizations provide information about providers:
American Medical Association
http://dbapps.ama-assn.org/aps/amahg.htm
The American Medical Association Web site "Physician Select" allows you to
search for information by name, medical specialty or by condition. You can
also find out the physician's gender, specialty and Board status, medical
school and graduation date, and residency training.
American Psychological Association
http://www.apa.org
Find out if a psychologist belongs to the APA by calling 1-800-964-2000. A
Customer Service Representative will provide you with the phone number of
the APA referral system in your area.
These organizations provide quality comparison tools:
HealthGrades
http://www.healthgrades.com
HealthGrades provides a variety of information on physicians and hospitals
based on data from the Centers for Medicare and Medicaid Services. Hospital
ratings include mortality by diagnosis and Leapfrog status. (Note: There is
a charge for some reports).
Hospital Compare
http://www.hospitalcompare.hhs.gov
Hospital Compare allows you to compare the quality of care provided in
acute-care hospitals (general hospitals) and critical access hospitals
(rural community hospitals) for adult patients with common medical
conditions such as heart attack, heart failure and pneumonia.
Leapfrog Group
http://www.leapfroggroup.org
The Leapfrog Group provides information on the quality of certain aspects of
care relevant to urban area hospitals.
Quality Check
http://www.qualitycheck.org
Quality Check is a comprehensive guide to the nearly 16,000 Joint
Commission-Accredited Health Care Organizations (JCAHO) and programs
throughout the United States. JCAHO provides organization-specific Quality
Reports which include:
JCAHO accreditation status;
Compliance with the Joint Commission's National Patient Safety Goals, and
performance on National Quality Improvement Goals (hospitals only). National
Quality Improvement Goals allow hospitals to report on the key indicators of
quality of care in up to four treatment areas: heart attack, heart failure,
community acquired pneumonia, and pregnancy and related conditions; and
Special quality awards.
Medical Quality Assurance
Most of these sites offer free information. Some will charge a fee. You may
choose to close any site that charges.
We are not ever the direct or indirect beneficiaries of any fees.
(ADAPTED FROM 11/23/05 WSJ)
Sites Offering Data Reviews of Doctors
American Medical Association DoctorFinder
What it offers: Basic credentials
on more than 690,000 licensed physicians in the U.S., such as educational
background and board certification. Those who belong
to the American Medical Association can create expanded listings that show, for
instance, office hours, accepted insurance providers and professional
achievements.
What it costs: Free.
Administrators In Medicine DocFinder
What it offers: Data on thousands
of doctors and other healthcare practitioners, including licensing background,
disciplinary history and other information provided by licensing boards in 19
states. DocFinder also provides links to Web sites
with information for many of the states not included in its own search tool. The
site is maintained by Administrators in Medicine, a nonprofit whose members
include executives of state medical and osteopathic boards.
What it costs: Free.
Federation of State Medical Boards Physician Data Center
What it offers: Reports
detailing the history of disciplinary actions taken against
doctors. A physician with a "clean" report has not been disciplined by a
state medical board.
What it costs: $9.95 per report.
HealthGrades.com
What it offers: "Quality
reports" on nearly 600,000 physicians, with information on doctors' medical
training, board certification, and any disciplinary action taken in the past
five years by state or federal officials. The site is
run by Golden, Colo.-based Health Grades
Inc., a publicly held healthcare quality ratings and services company.
What it costs: $7.95 for a report
on an individual doctor. For $9.95, users can access a report on 20 physicians
in a given geographic location.
RateMDs.com
What it offers: Patient
ratings on more than 16,500 doctors in the U.S., with rankings for punctuality,
helpfulness and knowledge. Doctors with high overall
ratings get a smiley face, while those with low marks get a sad face.
What it costs: Free.
DrScore.com
What it offers: More than
7,800 patient ratings of about 6,500 doctors in the U.S., compiled by privately
held Medical Quality Enhancement Corp., based in Winston-Salem, N.C.
What it costs: Free.
Researching a Health Care Lawyer
The National Bar
Association
Executive editor. John Crump, 202-842-3900.
Martindale-Hubbell Law
Directory and M-H Lawyer Locator
Also sponsors www.lawyers.com
for individuals and small businesses, listing attorneys by location or
specialty.
West's Legal Directory,
Similar to Martindale-Hubbell directory.
Legal Serv
Legal directory containing over 500,000 attorneys and law firms.
GASTROENTEROLOGY AND GASTROINTESTIONAL RESEARCH
TABLE 1. Digestive Diseases Search Resources
Medical Search Engines With Gastroenterology Indexes
MedMatrix
Gastroenterology Index
Annotated categorical listing of sites that are peer-reviewed and ranked by an
editorial board based on their utility for point-of-care clinical application.
Gastroenterology Web Pages With Extensive Links
Columbia
University Gastroenterology Links
One of the first academic gastroenterology web sites.
Dr K's Index of GI Sites and Articles
In addition, has other interesting links such as health insurance and job
market.
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
TABLE 2. Online Professional Organizations in Digestive Diseases
American College of
Gastroenterology
Collection of practice guidelines in gastroenterology with abstracts and
references; the forum "GI Focus" provides discussion on clinical
topics encountered in daily practice; online journal American Journal of
Gastroenterology; consumer health brochures; gastroenterology physician locator.
American Dietetic Association
(ADA)
Online journal The Journal of The American Dietetic Association with abstracts;
extensive list of nutrition related web sites for professionals and the public;
searches for registered dietitians in any region of US; very useful nutrition
fact sheet for the public.
American Gastroenterology
Association
A well organized and sophisticated site; online journal Gastroenterology;
practice guidelines for clinicians; public policy issues for the physician;
practice management tools; gastroenterologist locator service for all states in
the United States; public discussion forum on the digestive disease.
American Pseudo-obstruction
and Hirschsprung's Disease Society (APHS)
Information brochures; two online newsletters "Gutwaves" and "The
Messenger."
American Society for
Gastrointestinal Endoscopy
Online journal Gastrointestinal Endoscopy:, clinical practice guidelines;
patient educational materials on endoscopic procedures.
American Society for
Parenteral and Enteral Nutrition
Online journals Journal of Parenteral and Enteral Nutrition and Nutrition and
Clinical Practice; information on several important publications such as
"Nutrition Support Team Resources"; clinical practice guidelines;
nutrition support clinical pathways; roster of regional chapters.
American Society of Colon and
Rectal Surgeons
Practice parameters on common colorectal problems; information directory of
residency programs; ListServ for colorectal surgery community; well prepared
patient brochures on common problems such as hemorrhoids.
Italian Liver
Foundation
Primarily in Italian, with a limited English version.
Society of American
Gastrointestinal Endoscopic Surgeons
Online journal Surgical Endoscopy; online bulletin "SCOPE"; clinical
practice guidelines; position statements and standards e.g., on granting
privileges for GI endoscopy by surgeons; information on fellowship programs.
Society of Gastroenterology Nurses
and Associates Inc.
Position statements on the role of endoscopy nurses in all aspects of endoscopy;
discussion forum.
United European Gastroenterology
Federation
An umbrella organization of gastroenterology in Europe.
United Network for Organ Sharing (UNOS)
Up-to-date news on the subject; weekly data on national waiting lists on
different organs; center specific data on graft and patient survival by state;
help to patients on choosing a center.
| TABLE 3. Digestive Disease Foundations |
American Digestive Health Foundation (ADHF)
A joint effort of American Gastroenterology Association, American Society of
Gastrointestinal Endoscopy and American Association for the study of Liver
Diseases, to advanced digestive diseases; current campaign on peptic ulcer
disease, colorectal cancer and vital hepatitis.
American Liver
Foundation (ALF)
Comprehensive and detailed patient education materials about liver diseases and
prevention: liver transplantation and organ donation.
Center
Watch-Clinical Trial Listings for Gastroenterology
International listing of ongoing clinical trials by geographic region and
disease categories.
Crohn's and Colitis Foundation of
America Inc.
Instructional materials about all aspects of Crohn's disease and ulcerative
colitis; including concerns specific to women and children; weekly news updates;
an online forum where questions can be directed to the specialists.
Crohn's and Colitis Foundation of
Canada
Bilingual with English and French sections; excerpts from monthly publication,
The Journal ; patient information materials.
Gluten Free Page
Links to sites by individuals with celiac disease, educational institutions,
commercial sites, pathology/endoscopy images, gluten-free cookbooks and other
gluten intolerance web sites.
Helicobacter Foundation
Extensive materials for patients and professionals on helicobacter pylori
including its history, epidemiology, and current treatments updated by Barry
Marshall, the discoverer of H. pylori, National Institutes of Health (NIH)
consensus statements.
Hepatitis B Coalition
"Vaccinate Adults!"-An outline newsletter for adults medicine
specialists; patient education materials available in several languages; links
to hepatitis and immunization sites; IAC Express, an e-mail news service.
Hepatitis B Foundation
Patient education materials about all aspects of hepatitis B with advice for
patients and carriers; a "drug watch" for drug therapies in various
testing stages and information for those interested in participating in clinical
trials; directory for hepatologists; glossary of useful phone numbers.
Hepatitis Foundation
International (HFI)
A multilingual site with English, French, Spanish, and Portuguese sections;
detailed information on hepatitis A, B, C, D, E, and F.
American Liver
Foundation (ALF)
Comprehensive and detailed patient education materials about liver diseases and
prevention: liver transplantation and organ donation.
Crohn's and Colitis Foundation of
America Inc.
Instructional materials about all aspects of Crohn's disease and ulcerative
colitis; including concerns specific to women and children; weekly news updates;
an online forum where questions can be directed to the specialists.
Crohn's and Colitis Foundation of
Canada
Bilingual with English and French sections; excerpts from monthly publication,
The Journal ; patient information materials.
Gluten Free Page
Links to sites by individuals with celiac disease, educational institutions,
commercial sites, pathology/endoscopy images, gluten-free cookbooks and other
gluten intolerance web sites.
Helicobacter Foundation
Extensive materials for patients and professionals on helicobacter pylori
including its history, epidemiology, and current treatments updated by Barry
Marshall, the discoverer of H. pylori, National Institutes of Health (NIH)
consensus statements.
Hepatitis B Coalition
"Vaccinate Adults!"-An outline newsletter for adults medicine
specialists; patient education materials available in several languages; links
to hepatitis and immunization sites; IAC Express, an e-mail news service.
Hepatitis B Foundation
Patient education materials about all aspects of hepatitis B with advice for
patients and carriers; a "drug watch" for drug therapies in various
testing stages and information for those interested in participating in clinical
trials; directory for hepatologists; glossary of useful phone numbers.
Hepatitis Foundation
International (HFI)
A multilingual site with English, French, Spanish, and Portuguese sections;
detailed information on hepatitis A, B, C, D, E, and F.
TABLE 4. Online Academic Gastroenterology and Hepatology Programs
Cleveland Clinic Foundation Department of Gastroenterology
Includes an interesting section for patients about how best to judge the quality of medical care.
Columbia University Gastroenterology
An excellent site with extensive GI links; endoscopic ultrasound page.
McMaster University Intestinal Disease Research Programme
Information for potential researchers and clinicians; emphasis on bench to bedside.
Queen's University Gastrointestinal Diseases Research Unit
Physician education program with quizzes, case histories and commentaries on current literature; cases with esophageal manometeric interpretations.
Stanford University Medical Center Liver Transplantation Program
Online quarterly Liver Bulletin; information for physicians and patients on liver transplantation; comparison on survival data for all of the major transplantation centers.
Temple University School of Medicine Gastroenterology Section
Interesting cases; list of clinical studies.
University of Cincinnati Division of Digestive Diseases
Information and classic articles on liver transportation.
University of North Carolina Division of Digestive Diseases and Nutrition
Center for functional gastrointestinal disorders; listing of ongoing clinical trials.
University of Southern California Liver Transplant Program and center for Liver Disease
A site for professionals; online version of print newsletter, "The Liver Circulation".
University of Utah Division of Gastroenterology
University of Virginia Center Study of Diseases Due to H. Pylori
H. Pylori laboratory for resistant organisms and development of new treatments.
Vanderbilt University Division of Gastroenterology
Washington University-St. Louis Children's Hospital Division of Pediatric Gastroenterology and Nutrition
Information on pediatric liver program.
TABLE 5. Government Health
Centers For Disease Control
Provides information on human diseases; their prevention and public health; region-specific recommendations for international travel on prevention of gastrointestinal diseases such as hepatitis and diarrhea; hepatitis A-E slide set.
National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)
Perhaps the best site for thorough patient information materials on a variety of common digestive diseases including nutritional and obesity issues; many other digestive disease sites link to this home page; patient recruitment for various ongoing clinical trials at NIH; up-to-date information on NIH grants and contracts; database on rare disorders.
National Digestive Diseases Information Clearinghouse
A service of the NIDDK, it is a large database on digestive disease materials not indexed elsewhere, such as book chapters, monographs, newsletters, pamphlets and journal articles; allows simple and complex searches on digestive diseases including nutrition and obesity.
National Library of Medicine (NLM)
Primarily for health professionals but there is also a large amount educational materials for the public; free access to MedLine through Internet Grateful Med or PubMed; search the Library of Medicine; clinical practice guidelines and quick-reference guides for clinicians published by Health Services and Technology Assessment; NIH clinical alerts; Visible Human Project; International MEDLARS centers for access to NLM for health professionals outside the US; links to other government agencies.
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TABLE 6. Sites of Specific Areas of Interest to the Gastroenterologist and Hepatologist
Endoscopy
University of Michigan Medical Center Gastrointestinal Endoscopy Home page
A catalogue of normal and abnormal endoscopic findings with some case discussions appropriate for training and general public.
Radiology
Radiology Cases-Brigham's and Women's Hospital, Harvard Medical School
As part of the MedShare consortium, this hospital provides a number of excellent teaching cases for all levels of gastroenterology.
Miscellaneous
GERD Information Resource Center
Maintained by Astra-Merck, Inc.: information for the public and health care professionals; abstracts of the 500 most cited articles on gastroesophageal reflux disease (GRED).
University of Alberta Electrogastrography
An excellent site for researchers and clinicians interested in electrogastrography; maintained by the University of Alberta, Department of Electrical Engineering; 112 references.
TABLE 7. Digestive Diseases and Other Related Online Journals
Canadian Journal of Gastroenterology
Current Topics in Gastroenterology
International Journal of Colorectal Disease
Journal of The American Medical Association
TABLE 8. Digestive Diseases Related Listserves
American Endosonography Club
E-mail address: EUS-L@nervm.nerdc.ufl.edu
List type: listserv
Comments: For endoscopists with interest in endoscopic ultrasound. Subscription requests should be sent to listserv@nerdc.ufl.eud.
Chronic Hepatitis Support
E-mail address: HEPV-L@sjuvm.stjohns.edu.
List type: listserv
Comments: Support for patients with viral hepatitis.
Chronic Autoimmune Liver Disease Support Group
E-mail address: LIVERSUPPORT-L@listserv.aol.com.
List type: listserv
Colon Cancer Support
E-mail address: COLON@sjuvm.stjohns.edu.
List type: listserv
Comments: Started by a survivor of colon cancer. Serves as a support group and educated forum.
Gastrointestinal Pathology
E-mail address: Gipath@list.mc.duke.edu.
List type: majordomo
Comments: For medical professionals with interest in gastrointestinal pathology.
Gastro Electronic Hilights Bulletin
E-mail address: GASTRO-EHLB@listserv.acor.org.
List type: listserv
Comments: For people diagnosed with chronic hepatitis and physicians who treat them.
Feeding Gastrostomies
E-mail address: gtube@gospel.iinet.net.au.
List type: special server
Comments: For parents of children with feeding tubes, adult users of feeding tubes, and professionals. See http://www.iinet.com.au/~scarffam/gtubelist/gtubelst.html for subscription.
Pullthrough
E-mail address: pullthrough@mail.serve.com.
List type: majordomo
Comments: For parents of children who had pull-through surgery.
WDA Discussion Group
E-mail address: WILSONS-LIST@listserv.acsu.buffalo.edu.
List type: listserv
Comments: For individuals interested in or afflicted by Wilson's disease.
Gastrointestinal, Liver & Other Genetic Disorders
Frequently questions
arise in my private medical practice about gastrointestinal, liver and other
symptoms in children from their
worried parents- especially from Jewish and/or Mediterranean backgrounds -about
Genetic diseases. These in my opinion are the best sources [and Links] for
information about the subject.
Center for Jewish Genetic
Diseases
This center is the first center in the world devoted to the study of the
diseases that affect Ashkenazi Jews. The center’s mission is to improve the diagnosis, treatment
and counseling of patients and their families suffering from the Jewish genetic
diseases and to conduct intensive research to combat these inherited diseases.
Mount Sinai School of Medicine
1 Gustave L. Levy Pl.
Box 1497
New York, NY 10029
(212) 659-6774
[Also The Center for Medical Genetics at Maimonides Medical Center, 4802 Tenth
Avenue,Brooklyn, NY 11219]
Bachman-Strauss
Dystonia & Parkinson Foundation
This foundation was established to provide support, research and treatment;
promote medical and patient education, and sustain local and regional support
groups for patients and caregivers confronting dystonia and other movement
disorders.
1 Gustave L. Levy Pl.
Box 1490
New York, NY 10029
(212) 241-5614
Bachmann.Strauss@mssm.edu
Canavan
Foundation
A volunteer, nonprofit foundation, whose goals are to support research and
to educate the medical community and at-risk populations.
110 Riverside Dr., #4F
New York, NY 10024
(212) 873-4640
(877) 4-canavan
Fax: (212) 873-7892
info@canavanfoundation.org
Fairwood Professional Building
Route 37
New Fairfield, CT 06812
(203) 746-2436
Fax: (203) 746-3205
Definition: Canavan
disease, carried by one in 35 Ashkenazi Jews, is a disease of the brain and
central nervous system. Canavan
patients have a deficiency of the enzyme aspartoacyclase, which is necessary for
normal brain development, and therefore cannot generate myelin, which insulates
nerve cells and allows transmission of nerve impulses.
Symptoms: The
disease is first clinically evident when a child is 3 months to 6 months old.
The most obvious symptoms are lack of head control, poor muscle tone,
increased head circumference and reduced visual responsiveness.
Affected infants fail to achieve developmental milestones and later on
lose those milestones, causing mental retardation.
Testing: With a
simple blood test, DNA-based carrier screening and parental tests are now
available at genetic centers. The
American College of Obstetricians and Gynecologists recommends that all
Ashkenazi Jewish couples be tested for Canavan.
Treatment: At
present, gene therapy is being evaluated as a possible treatment for Canavan
disease. The only treatments are
for relieving discomfort.
Fanconi Anemia Research
Fund
A family-driven fund that helps support research on this under diagnosed
blood disorder. It also supports an
international network for support, education and help, and publishes four
newsletters.
1801 Willamette St., Suite 200
Eugene, OR 97401
(541) 687-4658
(800) 828-4891
Fax: (541) 687-0548
info@fanconi.org
Definition: Fanconi
anemia is a fatal, recessive blood disorder that causes bone marrow failure and
may cause birth defects. One in 87
people of Ashkenazic ancestry carries a defective Fanconi anemia gene.
If both parents carry a defect in the same Fanconi anemia gene, each of
their children has a 25% chance of having Fanconi anemia.
Patients usually do not reach adulthood.
Symptoms: Patients
may feel fatigue and have frequent infections, nosebleeds or bruises.
Blood tests may show a low white or read blood-cell or platelet count or
other abnormalities. Fanconi anemia
may sometimes be seen at birth through physical defects, such as missing thumbs,
kidney problems or an undersized head or sex organ.
Testing: The
only definitive test is a chromosome breakage test. Some of the patients’ blood cells are treated in a test
tube with a chemical that affects the DNA, causing Fanconi anemia cells to show
chromosome breakage. These tests
can be performed prenatally.
Treatment: Researchers
are still looking for a cure for this disease.
A number of treatments exist, ranging from a medication called
Oxymetholone, used to stimulate hemoglobin, to a bone-marrow transplant.
Patients will always carry the defective gene and are susceptible to
malignancies such as leukemia and head, neck, gastrointestinal and gynecological
cancers.
National Gaucher
Foundation
A nonprofit organization that supports research and development for
treatments and a potential cure. Among the many programs: a medical hotline, two care programs
to help pay for treatment, education resources, symposia and local chapters.
5410 Edison Ln., Suite 260
Rockville, MD 20852
(301) 816-1515
(800) 428-2437
Fax: (301) 816-1516
ngf@gaucherdisease.org
Definition: Gaucher
disease results from defects in a gene that is responsible for an enzyme called
glucocerebrosidase. This enzyme
helps the body break down particular kinds of sugary fat.
For people with Gaucher disease, the body is not able to produce this
enzyme properly, and the fat cannot be broken down.
The sugary fat accumulates, primarily in the liver, spleen and bone
marrow.
Among Ashkenazi Jews, Gaucher disease is the most common
genetic disorder. About one in 13
individuals is a carrier. Some
one-tenth to one-third of those with the disease shows symptoms.
This disease occurs in non-Jews, but is much rarer.
Symptoms: The
major signs and symptoms are enlarged liver and spleen, low blood counts and
bone involvement, including pain and fracture.
Patients may have increased bleeding and anemia-induced fatigue.
Testing: A
simple blood test is used to determine whether a person experiencing symptoms
has Gaucher disease. Chorionic
villus sampling and amniocentesis can be used to diagnose Gaucher disease during
early pregnancy.
Treatment: In
the spring of 1991, enzyme replacement therapy became available as the first
effective treatment for one of the variants of the disease.
The treatment consists of a modified form of the glucocerebrosidase
enzyme that is administered intravenously.
Indications are that enzyme replacement therapy reverses the symptoms of
Gaucher disease, allowing individual to enjoy a better quality of life.
Definition: Tay-Sachs
disease is caused by the congenital absence of a vital enzyme, hexosaminidase A.
Without the enzyme, the body cannot break down one of its own fatty
substances, which builds up abnormally in the brain and progressively impairs
the central nervous system.
The gene that causes the infantile form of this disease is
present in about one in 27 Ashkenazi Jews in America. About one in 250 Sephardi Jews and people not of Jewish
decent are also carriers.
Symptoms: The
disease usually is not clinically evident until a child is 4 month to 8 months
old, when peripheral vision is lost and abnormal startle response is observed
along with delayed developmental milestones.
By age 1, most patients begin to lose motor and coordination skills.
Eventually, they become blind, mentally retarded and paralyzed.
Death usually occurs by age 5. In
juvenile Tay-Sachs, symptoms present and progress in early childhood, and life
expectancy is longer.
Testing:
A blood test determines the amount of hex A in the cells and reliably
predicts whether a person is a carrier. DNA
testing is also available. If both
members of a couple are carriers, then have a one-in-four risk of having an
affected child. Amniocentesis or
chorionic villus sampling determines if the fetus is affected.
If testing occurs during pregnancy, leukocyte analysis should be utilized
to reduce the chances of an inconclusive result.
Treatment:
Only symptom control and discomfort relief are available.
Current research includes gene therapy, skin cell therapy, stem cell
therapy and substrate deprivation therapy.
Late Onset Tay Sachs
Foundation
Services include support for members, a bimonthly newsletter, an annual
conference, a speaker’s bureau and education of health professionals and the
medical community. The Late Onset
Tay-Sachs Foundation is also involved in raising money for research.
1303 Paper Mill Road
Erdenheim, PA 19038
(215) 836-9426
(800) 672-2022
Fax: (215) 836-5438
lotsf@verizon.net
Definition: Late
onset Tay-Sachs (LOTS) occurs in the adolescents and adults and is the result of
having only small quantities of hexosaminidase A rather than a complete absence.
Since the first cases were described in the 1970s, the disease has bene
detected in less than 200 patients. The
prevalence of the late onset gene among Ashkenazi Jews is not known.
Symptoms:
Symptoms are not consistent among patients.
They include clumsiness, speech impediments, unstable gait and balance,
muscle weakness, tremors, memory impairment and mood alterations.
Testing:
Same as for the infantile-onset Tay-Sachs.
In the past, many affected people were misdiagnosed as having muscular
dystrophy or multiple sclerosis.
Treatment:
While in the past treatment has been focused on managing the varied
symptoms of LOTS, new therapies currently in progress and in development hold a
lot of promise. The first clinical
trial in patients with LOTS is currently underway at two sites:
the University Hospitals of Cleveland and New York University.
This therapy is looking at the effects of enzyme inhibition therapy,
which reduces the formation of fatty substances that cannot be broken down by
the low hex A enzyme level. Preliminary
results should be available in about one year.
Stem cell therapy and gene therapy may both hold hope for treatment in
the future, and some laboratories are currently investigating these therapies in
mouse models. Also on the horizon
is enzyme replacement therapy, but the trick here is getting the hex A enzyme
into the central nervous system once it is in the body. Investigators are currently looking at this option, similar
to the enzyme replacement therapy that is now available for similar diseases,
such as Gaucher and Fabry disease.
National MPS Society (Muclolipidosis)
A support group, public education center and research fundraising
organization. Publishes a
newsletter, a membership directory and Spanish-language brochures.
Also sponsors conferences.
45 Packard Dr.
Bangor, ME 04401
(207) 947-1445
Fax: (207) 990-3074
info@mpssociety.org
ML4 Foundation
This foundation is a nonprofit organization for parents and professional
committed to raising funds for ML 4 research.
It also provides a support network for parents and siblings of affected
children.
719 East 17th St.
Brooklyn, NY 11230
(718) 434-5067
(718) 859-7371
www@ml4.org
Definition: Muclolipidosis
(ML4), first described in 1974, is characterized by the deficiency of a
transport protein that plays a crucial role in the psychomotor development.
It is the most-recently recognized genetic disorder affecting Ashkenazi
Jews; one out of 100 Ashkenazi Jews are carriers.
Symptoms: Children
with ML4 begin to exhibit developmental delays during the first year of life.
Motor and mental retardation can be mild to severe.
Patients with ML4 have severely impaired abilities in crawling, walking,
talking and learning basic skills. ML4
also severely limits vision. Many
patients experience clouding of the cornea.
Testing: Currently,
a diagnosis of ML4 is made in mildly to moderately retarded Jewish children who
also have corneal clouding. Prenatal diagnosis, which has been successful through
amniocentesis, must be performed at centers that have experience with
specialized techniques. Carrier
testing is available. ML4 may soon
be added to the battery of diseases screened for in the United States.
Treatment: No
specific treatment is available; care focuses on support therapies and medical
management to improve quality of life. The
recent discovery of the gene may eventually lead to gene therapy or other forms
of treatment.
National Dysautonomia
Research Foundation
National Dysautonomia Research Foundation is a nonprofit foundation,
established to help those who are afflicted with any of the various forms of
Dysautonomia. It provides a support
network for afflicted individuals and family members by providing information on
the various forms of Dysautonomia, as well as providing contacts to other
organizations that may be of assistance.
1407 W. Fourth St., Suite 160
Red Wing, MN 55066
(651) 267-0525
Fax: (651) 267-0524
Dysautonomia
Foundation
This is a nonprofit, voluntary organization founded in 1951 by parents of
afflicted children. It is
headquartered in New York, with 16 chapters in the United States, Canada, Great
Britain and Israel, and provides information upon request.
633 Third Ave., 12th floor
New York, NY 10017
(212) 949-6644
Fax: (212) 682-7625
Familial Dysautonomia
Hope
FD Hope is a nonprofit organization whose mission is to expand and
accelerate scientific research that will find a cure for FD.
Programs include grants for medical research, awareness and education for
the public and within the medical community; support for FD families promotion
of carrier screening, and advocacy.
605 5th Avenue.
Conover, NC 28613
(828) 695-1060
Fax: (828) 695-1060
info@fdhope.org
Definition: Familial
Dysautonomia (FD), also known as Riley-Day syndrome, is a progressive
neurogenetic disorder that affects the sensory and autonomic nervous systems.
It is estimated that about one in 27 Ashkenazi Jews is a carrier of the
FD gene.
Symptoms: Unable
to control bodily functions. Individuals
with FD suffer from episodes of cyclical vomiting with high blood pressure and
heart rate, sweating and fever, called “autonomic crisis,” one of the most
devastating symptoms of this disease. Problems with both high and low blood pressure as well as
breathing problems (apnea and aspiration pneumonias) result in early death.
Infants and young children with FD have delay in speech and motor
development, difficulty suckling and feeding, and low muscle tone.
As they age, poor growth, back curvatures (scoliosis and lordosis) and
decrease sensation to pain and temperature become evident.
Two hallmarks of FD are the inability to cry tears, which can lead to
severe eye damage, and the lack of certain taste buds on the tongue, giving it a
relatively smooth and shiny appearance. Intelligence
is usually normal in affected individuals; however, learning disabilities are
common.
Testing: In
January 2001, the two mutations that cause the disease were identified, and the
carrier test is now available. The
reliability of the blood test is greater than 99%.
Treatment: The
first treatment ever suggested for FD was announced on May 26 of this year.
This exciting breakthrough by researchers at Fordham University revealed
that a form of Vitamin E (tocotrienol) improves IKAP gene function, which is
affected by the FD mutation. Significant
improvements have been reported by patients who have begun using tocotrienol,
and the treatment holds promise for improving the health and quality of life for
those afflicted with FD.
Dystonia
Medical Research Foundation
The goals of this foundation are to advance research into the causes of and
treatments for dystonia, build awareness in the medical and lay communities, and
sponsor patient and family support groups and programs.
1 East Wacker Dr., Suite 2430
Chicago, IL 60601
(312) 755-0198
Fax: (312) 803-0138
dystonia@dystonia-foundation.org
Definition: Dystonia
is a neurological disorder characterized by involuntary muscle contractions,
sometimes with intermittent spasms or tremors.
It can affect any part of the body but does not affect intellect.
It is not a fatal disorder.
In 1997, researchers identified the DYT1 gene responsible
for one form of the disease, early-onset generalized dystonia.
The gene that causes this form of the disease is dominant, and a carrier
has a 30% to 40% chance of developing symptoms.
There are other types of idiopathic torsion dystonia (ITD), also
described as dystonia musculorum deformans or generalized dystonia, which is
more prevalent in Ashkenazi Jews than in the general population.
Estimates for the gene’s prevalence in the Ashkenazic population vary,
ranging from one in 900 to one in 3,000.
Symptoms: Dystonia
manifests itself in sustained, involuntary contractions of the muscles in one or
more parts of the body. ITD
typically starts in on part of the body, including the back, neck or arm.
Testing: There
is now a simple blood test for DYTI, and hopefully that testing will soon be
available for other forms of the disease. The
diagnosis of dystonia also rests upon neurological examination.
Prenatal diagnosis can be determined from samples of amniotic fluid from
the pregnant woman’s womb.
Treatment: There
is no cure for dystonia, but treatments include drug therapy, botulinum toxin
injections and several types of surgery. With
the mapping of the gene code, gene or enzyme therapy may become a possibility.
National Niemann-Pick
Foundation
An international, voluntary, nonprofit organization made up of parents and
medical and educational professionals. It promotes research, provides medical and educational
information to assist in diagnosis and offers families referrals, support and
genetic counseling.
P.O. Box 49
415 Madison Ave.
Ft. Atkinson, WI 53538
(920) 563-0930
Fax: (920) 563-0931
nnpd@idcnet.com
Definition: Niemann-Pick disease includes several subtypes, two of which stem from a deficiency of the acid sphingomyelinase, an enzyme that breaks down a fatty substance called sphingomyelin. As a result of the enzyme deficiency, the unbroken-down fat accumulates mainly in the spleen, lymph nodes and brain. About one in 73 Ashkenazi Jews is a carrier.
Type A is a neurodegenerative disorder of infancy, and type
B is a milder disorder that doesn’t affect the brain but results in
involvement of the liver, spleen, lungs and bone marrow.
Symptoms: Type
A begins in the first few months of life, and symptoms may include feeding
difficulties, an abnormally large abdomen at the age of 3 months to 6 months and
progressive loss of early motor skills. Type A generally leads to death by 2 or 3 years of age.
The symptoms for type B may include abdominal enlargement and respiratory
complications.
Testing: Carrier
testing can be done by DNA analysis, and prenatal diagnosis can be made by
determining acid sphingomyelinase activity, specific DNA mutations in blood
somes or by analyzing chorionic villi or amniotic cells early in pregnancy.
Treatment: The
acid sphingomyelinase gene has been used to produce large quantities of the
human enzyme in the laboratory for future therapeutic evaluation.
Mice with Niemann-Pick type A have been generated, and studies have been
initiated to treat these mice by bone-marrow transplantation and gene therapy.
United Leukodystrophy
Foundation
A group that works to increase public awareness about leukodystrophy and
other white-matter disorders as well as provide support services to those with
the disease and their families, such as information and assistance in finding
sources of medical care, social services and genetic counseling.
2304 Highland Dr.
Sycamore, IL 60178
(800) 728-5483
Fax: (815) 895-2432
ulf@tbcnet.org
Clinical Guidelines
and Standards of Cares
| Clinical Guidelines and Standards of Cares For Hepatitis | ||
| Prostate Calculator for Prostate Cancer | ||
ACUTE HEPATITIS DIAGNOSIS AND MANAGEMENT Useful Websites for Hepatitis diagnosis, management : and Standards of Care. The American Association for the Study of Liver Diseases www.aasld.org/ The American Liver Foundation http://www.liverfoundation.org/ American College of Gastroenterology http://www.acg.gi.org/ American Hepato-Pancreato-Biliary Association http://www.ahpba.org/ European Association for the Study of the Liver http://www.easl.ch/ International Liver Transplantation Society http://www.ilts.org/ Hepatitis Foundation International http://www.hepfi.org/ The Viral Hepatitis Prevention Board http://www.vhpb.org/ SIGN (Safe Injection Global Network) http://www.injectionsafety.org/ HEPATITIS MANAGEMENT GUIDELINES FROM A TO E FROM THE WORLD GASTRENTEROLOGY ORGANIZATION WITH WEBSITE CITATIONS OMGE Practice Guideline: Management of Acute Viral Hepatitis 1. Definition Acute viral hepatitis (AVH) is a systemic infection predominantly affecting the liver. AVH is most often caused by viruses which are hepatotropic (hepatitis A, B, C, D and E). Other viral infections may on occasion affect the liver (cytomegalovirus (CMV) , Herpes Simplex, Coxsackie virus, Adenovirus). Whereas hepatitis A and E are self-limiting, infection with hepatitis C and less so with hepatitis B mainly become chronic. 2. Introduction & Key Points Possibly the key difference between this OMGE guideline and all other published work dealing with Acute Viral Hepatitis is an awareness of its potential for mismanagement. After all, the single most important issue as regards the management of Acute Viral Hepatitis is that in the great majority of cases treatment should be supportive and does not require hospitalization or medication. Surgical intervention (during the acute state or because of misdiagnosis) may be dangerous. Anecdotal evidence suggests there is often mismanagement of this condition - especially in low resourced settings. Whereas most acute infections are asymptomatic, when symptoms are present they appear to be similar for all 5 virus varieties. It is important toestablish the virus involved as risks of progression differ. • Hepatitis A: self-limiting. The fulminant hepatic failure (FHF) rate is very low; there is a 1% fatality rate with an age>40yr • Hepatitis B: self-limiting in 95% of cases (adults only), not so in those < 5 yr • Hepatitis C: self-limiting in 20%–50% of cases (>90% if treated with interferon alpha monotherapy) • Hepatitis D: self-limiting if HBV is self-limiting • Hepatitis E: self-limiting. The overall case fatality in FHF is 1–3%; in pregnant women this is 15–25% For the most part only supportive treatment is required. If HAV is endemic Hepatitis A infection can be excluded, as earlier infection induces lifelong immunity. A second important issue is the identification of risk groups. In pregnancy for example it is very important to exclude HEV. Similarly, acute hepatitis is more dangerous in adults than in children, particularly when > 40 yr, more so if there is a background of chronic liver disease. In all cases risk groups for severe hepatitis should be identified - usually this affects older adults and those with underlying chronic liver disease. Acute fulminant hepatitis may occur at any age. Key points to remember: a.. An acute "hepatitis" maybe caused by a virus, a toxin or be the first manifestation of a chronic liver disease b.. Acute Viral Hepatitis is almost always self-limiting c.. In almost every case it is best to do nothing (except to stop medication such as OCP (oral contraceptive pill) d.. No role for vitamins - especially in developing countries a lot of I.V. vitamins are given unnecessarily e.. No role for restriction of proteins in uncomplicated acute hepatitis - in developing countries patients may already be deprived of proteins; this leads to protein deficiency with its associated complications f.. Start exercise as soon as the patient feels fit to do so, there is no need to keep patients in bed g.. Raised serum alanine transaminase (ALT) is the best indicator of acute hepatic injury but does not reflect disease severity (bilirubin and international Normalized Ratios (INR) are required for this) h.. All AHV forms show the same symptoms i.. Take account of endemicity eg: Hepatitis A predominantly affects children in endemic areas j.. Ascertain if it is an acute infection or a flare-up of a silent chronic infection k.. Other chronic liver diseases may present acutely, for example autoimmune hepatitis l.. Consider transmission and thus prevention and vaccination where appropriate m.. In a pregnant woman with HBV, protect the newborn infant with HB vaccine and HBIG at birth Acute HCV - It is important to test for HCVRNA and anti-HCV immediately a.. If both are present ® likely flare up of chronic HCV b.. If only HCVRNA is present ® likely acute HCV, follow up for development of anti-HCV The onset of drowsiness and/or a coagulopathy in a patient with acute viral hepatitis is always sinister 3. Acute Hepatitis A 3.1. Pathogenesis and natural cause Hepatitis A virus (HAV) is an RNA containing virus of the picornaviridae type. The key feature is that it is a self-limiting disease. Management of HAV should therefore be supportive. The average HAV incubation time is 28 days and can vary from 15–45 days. HAV Infection is self limiting and does not require treatment; vaccinate contacts (particularly in low incidence areas). There is no chronic infection, HAV infection induces life long immunity. Some people with HAV will have relapses after 6-9 months. The risk of fulminant hepatitis failure is very rare (0.01–0.1%) but increases with age and with pre-existing liver disease. In those >40 yr there is a 1% fatality rate. 3.2. Epidemiology - Prevalence and Incidence There are an estimated 1.5 million acute hepatitis A casesannually worldwide, or depending on the local endemicity around 150/100,000 –most of these occur in areas with poor hygiene and a poor sanitation infrastructure. Prevalence and Incidence of HAV infection are directly related tosocio-economic conditions. Infection occurs predominantly inchildhood. Typically more than 90% of children in developing countries areinfected with HAV virus. More than 90% of children in developing areas have been infected with HAV (life long immunity) 3.3. Risk Factors Transmission HAV is found in the stool of persons with acute HAV in the pre-symptomaticand early phases of the disease. HAV is usually spread between persons byputting something in the mouth that has been contaminated with the stool from anHAV infected person. This means HAV transmission is fecal-oral. Mosttransmissions take place from contact with a household member, tourist travel to an endemic area , from a sex partner who has HAV, from an infection in anindividual preparing food or with babies in nurseries. HAV transmission is fecal-oral Poor hygiene and poor sanitation pose the greatest risks Risk Groups/Circumstances for HAV: a.. Children living in poor sanitation and low hygiene areas b.. Children living in HAV high prevalence areas c.. Those participating in anal sex d.. Illegal intravenous drug users (homeless) e.. Poor sanitation f.. Consumers of high risk foods (e.g. raw shellfish) g.. Day-care employees and family of children in day care h.. People travelling to endemic areas 3.4. Diagnosis and differential diagnosis All forms of acute viral hepatitis present the same way initially. HAV virus is reliably diagnosed by IgM anti-HAV (the presence of IgG antiHAV enotes past infection). Persistent IgM anti-HAV can sometimes be detected in autoimmune hepatitis In children the illness is usually asymptomatic. Inadults HAV infection is usually symptomatic. Principal symptoms are: a.. Jaundice (yellowing of the skin and eyes) b.. Fatigue c.. Abdominal pain d.. Loss of appetite e.. Nausea f.. Diarrhea g.. Fever h.. Dark urine i.. Relapse with cholestasis or serum sickness 3.5. Acute hepatitis management The subjective impression of the patient should guide thedoctor's attitude. Neither hospital admission, quarantine or bed rest ormedication (e.g. vitamin applications, dietary restrictions, blood transfusions) are necessary. Treatment should be conservative and supportive. There is no specific medication for HAV infection. Hygiene is very important, always wash hands after bathroom use. Management should be focused on treating symptoms and on identifying the small proportion of those at special risk of developing fulminant hepatic failure. Those > 40 yr and those with underlying chronic liver disease are most at risk. Contacts should be vaccinated. OCP and Hormone replacement therapy (HRT) should be stopped to avoid cholestasis. Alcohol consumption is not advised. 3.6. Prevention There are a number of inactivated vaccines on the market Vaccination for pre-exposure prophylaxis (for example VAQTA from Merck or HAVRIX from GSK) provides long term protection for up to 20 years. Vaccination for post exposure prophylaxis should be given as early as possible. 3.7. The Future Improving sanitation and water supplies are the most important goals to help prevent HAV infection (and many other infections!) Key items are: a.. Building a better public health infrastructure b.. Improve sanitation and water supplies c.. Health visitor action programmes (education and training, hygiene and handwashing) d.. Development of easy and low-cost diagnostic kits e.. Pre-exposure vaccination for those at risk (travellers, military personnel, male homosexuals, day care employees) f.. Post-exposure vaccination to contacts of acute HAV g.. Always check for Hep B + immunity and vaccinate when needed (WHO advocates universal vaccination for hepatitis B) 3.8. Further Information Hyperlinks for HAV: 3.9. Summary The clinical course of acute hepatitis A is indistinguishable from other types of acute viral hepatitis. However, if HAV IgM is positive it is not necessary to check for other causes of Acute Viral Hepatitis. Symptoms typically include fever, malaise, anorexia, nausea and abdominal discomfort and sometimes diarrhea, followed by dark urine and jaundice. The severity of disease and mortality increases in older age groups. The convalescence following hepatitis A may be slow, and is characterized by fatigue, nausea and lack of appetite. Complications of hepatitis A include relapsing hepatitis with or without a cholestatic component and fulminant hepatitis. Fulminant hepatitis occurs in approximately 0.01% of infections and is characterized by persistent nausea, vomiting and bruising with rapid deterioration in level of consciousness and in liver function. There is a very high fatality rate. Chronic infection with HAV does not occur. No specific antiviral therapy is currently available. Therefore only supportive measures are indicated, abstinence from alcohol may be advised. The subjective impression of the patient should guide the doctor's attitude. No measures such as quarantine, long term hospitalisations, vitamin applications (except in the case of a diagnosed avitaminosis), other "supportive" medications or blood transfusions should be administered to patients. 4. Acute Hepatitis B 4.1. Pathogenesis and natural cause Hepatitis B virus (HBV) is a DNA containing virus of the Hepadnaviridae type. The virus is present in most body fluids of individuals with acute or chronic hepatitis and in inactive carriers. It is transmitted by parenteral route for example as a result of sharing needles. Oral transmission is unlikely. Sexual contact is a frequent cause. Unvaccinated healthcare workers are a high-risk group because of the risk of needlestick Injury. In endemic areas Hepatitis B is often transmitted vertically or horizontally amongst young children playing together (biting and scratching) HBV incubation time is 60 days and can vary from 28–160 days. Approximately 30% of infections among adults present as icteric hepatitis and 0.1–0.5% develop fulminant hepatitis. When fulminant hepatitis occurs the immune response to infected hepatocytes is overwhelming and there is often no evidence of viral replication. Testing for HBsAg may be negative ; hence the need for further anti HBc (IgM) testing. Infection resolves in >95% of adults with loss of serum HBsAg and subsequently the appearance of anti-HBs. Natural immunity is characterised by detecting anti-HBc plus anti-HBs. HBV infection leads to one of four outcomes: a.. Recovery after acute infection (>95% in previously healthy adults <40 yr) b.. Fulminant hepatitis c.. Chronic Hepatitis B d.. Inactive carrier state The outcome of HBV infection depends on immunological factors and possibly in part on virus characteristics. The age at which the infection occurs plays a very important role. When perinatally acquired and in infants under 1 yr old, chronic infection will develop in 80–90% of cases; in children between 1–5 yr 30–50% will go on to develop chronic infection. By comparison, 30–50% of adults who become actively infected with HBV are symptomatic but only 2–6% of these adults develop chronic infection. 95–99% of previously healthy adults with acute HBV infection recover completely 4.2. Epidemiology – prevalence and incidence WHO estimates that over 5 million cases of acute hepatitis B infection occur annually. The incidence of HBV infection and patterns of transmission vary greatly throughout the world according to the endemicity, with rates between 0.1–120/100,000. The average annual incidence of acute hepatitis B for Europe is 20 per 100,000 population. The resulting estimate is approximately 950,000 people infected every year. Of theses 90,000 will become chronically infected of whom 20,000 will die from cirrhosis or liver cancer. Hepatitis B virus infection is a global health problem. Two billion people have been infected worldwide; 360 million are chronically infected; over 520,000 die each year (50,000 from acute hepatitis B and 470,000 from cirrhosis or liver cancer). The prevalence and incidence of HBV varies greatly in different areas of the world. HBV is most prevalent in China, Southeast Asia, sub-Saharan Africa, most Pacific Islands and the Amazon basin. There are also high prevalence rates in the circumpolar region (North Pole). In the developed world Hepatitis B is an illness affecting mostly high-risk adults, in the world's poorer areas it is highly endemic and widely present in children. All vaccination programmes are best focused on immunization in infants and children because at this age chronic infection can be prevented. In the western world the focus has been on vaccination of adults in high risk groups such as male homosexuals and healthcare workers. The WHO advocates universal vaccination. 4.3. Risk factors & transmission Adult Risk groups for acute HBV infection a.. Health care workers b.. Policemen c.. Migrant populations d.. Asylum seekers and refugees e.. Military personnel f.. Tourists & Students (unsafe sex) g.. Any unsafe sex h.. Injecting drug users i.. Hemodialysis patients (always become carriers) j.. Firemen k.. People in prison l.. Persons receiving unsafe injections m.. Persons receiving unscreened blood transfusions n.. Unsafe piercing, tattooing, acupuncture, tribal scarification, circumcision Re-use of injection equipment may cause up to 20 million HBV infections each year Transmission routes HBV is transmitted through body fluids such as blood, saliva, semen, (breast milk is controversial). The route can be : a.. Perinatal (from mother to baby at birth) (vertical) b.. From child to child (horizontal) c.. From unsafe injections and transfusions (parenteral) a.. Unsterile instruments, tattoo needles, dental equipment, other sharp objects eg: in scarification, female circumcision d.. Sexual contact (sexual) a.. unprotected sex (whether heterosexual or homosexual) HBV is transmitted through either skin puncture or mucosal contact with bloodor other infectious body fluids. The virus is found in highest concentrations inblood and serous exudates. 4.4. Diagnosis and differential diagnosis The most common symptom of hepatitis infection is fatigue or tiredness. Fever, muscle, joint aches and serum sickness syndrome may be present in the prodrome of acute HBV. Some people will notice that their urine becomes darker and their skin will show a yellowish tint (Jaundice). Principal symptoms Less common symptoms Fatigue and tiredness Weight loss Malaise Depression Jaundice Anxiety, irritability Fever Headaches Muscle & joint aches Sleep disturbance Discomfort in the abdomen on the right side Itching Nausea and diarrhea Appetite loss Serological tests are available commercially for a variety of antigens and antibodies associated with HBV infection. In the case of a suspected acute infection HBsAg will be positive and should be cleared within 3–6 months after the acute onset (always do a follow-upre-check). It is impossible to distinguish acute hepatitis B from a flare-up of chronichepatitis B without follow-up - this is essential in all cases. 4.5. Acute Hepatitis B Management A spontaneous recovery after acute infection with HBV occurs in 95%-99% of previously healthy adults. Antiviral therapy is not likely therefore to improve the rate of recovery and is not required unless accompanied by a non-hepatic complication such as periarteritis nodosa. In such cases and in the case of immunocompromised persons (e.g. with chronic renal failure) anti viral therapy with lamivudine may be recommended. In fulminant hepatitis meticulous intensive care may improve survival but orthotopic liver transplantation is the only proven therapy that improves patient outcomes. Full recovery with development of anti-HBs provides long term protection. 4.6. Prevention Vaccination (available since the early 1980s) continues to be the best way for dealing with the condition, Hepatitis B is preventable and universal vaccination is probably best - certainly in countries where the prevalence is high. Two types of Hepatitis B vaccine are available. a.. Recombinant or genetically engineered vaccines are made using HBsAg synthesized in yeast (saccharomyces cerevisiae) or in mammalian cells into which the HBsAg gene has been inserted. Both consist of a suspension of HB surface antigen. Each country has different preparations. b.. Human plasma-derived vaccines (PDV) are prepared from purified HBsAg from the plasma of persons with chronic HBV infection. There are more than 15 different PDVs licensed worldwide. There are no significant differences in safety, immunogenicity or efficacy between these two types of vaccines. HBV vaccines will generate protective (>10 IU/ml) levels of antibodies to HBsAg in 95% of children and 90% of adults. Re-vaccination works in 80% of persons who did not respond to primary vaccination. Revaccination of non-responders is not recommended after two series of vaccinations (6 doses). A distinction can be made between Pre-Exposure and Post-Exposure Vaccination. 4.6.1. Pre-Exposure Vaccination This is especially relevant in high risk groups. There are a number of recombinant vaccines – they are similar in efficacy but dosing may differ, for example: Recombivax-HB (10 mg of HBsAg) Child<11 yr HBsAg negative mother 2.5 mg (babies at birth) Child<11 yr HBsAg positive mother 5 mg Child 11–19 5 mg Immunocompetent adult 10 mg Immunosuppressed person 40 mg Renal dialysis person 40 mg Engerix-B (20 mg of HBsAg) Child <10 yr 10 mg (babies at birth) Child >10 yr 20 mg Adult 20 mg Immunosuppressed person 40 mg Dialysis person 40 mg 4.6.2. Post-Exposure Vaccination A combination of Hepatitis B Immunoglobulin (HBIG , where available) ) and HBV vaccine is recommended. If HBIG is available (in most countries it is not) it should be given to all children of HBs+ mothers at the time of delivery. This is of especial relevance in neonates where an immediate start of postexposure immunisation will prevent neonatal infection in infants of HBV infectedmothers. It is important to vaccinate within 24 hours. There is no evidence of aprotective effect if the vaccine is given > 7 days after delivery. Direct exposure (percutaneous inoculation or transmucosal exposure) to HBsAgpositive body fluid (e.g. needlestick Injury): a.. HBIg single intramuscular dose of 0.06 ml/kg (as soon as possible) b.. Followed by complete course of HBV vaccination (within 7 days) Direct Exposure following sexual contact with a patient with HBV a.. HBIg single intramuscular dose of 0.06 ml/kg (within 14 days) b.. Followed by complete course of HBV vaccination (do not wait!) 4.6.3. Contraindications & side-effects There are very few contraindications. a.. Severe allergic reaction to previous doses b.. Severe allergic reaction to baker's yeast (as used in making bread), plasma-derived HBV vaccine can be used instead c.. Fever >38.5°C The following are not contraindications to administering HBV vaccine: a.. Any minor illness such as respiratory tract infection or diarrhea with a temperature below 38.5°C b.. Allergy or asthma c.. Treatment with antibiotics d.. HIV Infection, more information is, however, needed on the efficacy of HBV vaccination in neonates or infants that are infected with HIV. e.. Breastfeeding f.. History of seizures g.. Chronic illnesses h.. Stable neurological conditions i.. Prematurity or low birth weight j.. History of jaundice at birth k.. Pregnancy (although not generally recommended) 4.6.4. Vaccine safety & quality Thermostability a.. HBV vaccines should never be frozen. The freezing point of HBV vaccine is -0.5°C. b.. HBV vaccine is stable for at least 4 years if stored between 2–8°C. c.. HBV vaccines are relatively heat stable and have only a small loss of potency when stored for 2–6 months at a temperature of 37°C. The Shake Test If you see HBV vaccine frozen then it is damaged. However, a vaccine may also have been frozen earlier and then thawed again. The Shake test can be used to check if the vaccine has been damaged by earlier freezing. a.. Compare the vaccine that you suspect has been frozen and thawed with vaccine from the same manufacturer that you are sure was never frozen. b.. Shake the vaccine vials c.. Look at the contents carefully d.. Leave the vaccines to stand side by side for 15–30 minutes for any sediment to settle e.. Do not use it if a sediment settles below an almost-clear liquid 4.7. The Future More potent adjuvants may reduce the number of vaccinations from 3 to 2 or 1 jab. New childhood vaccines are now being developed. New childhood vaccines with more potent adjuvants are now being developed. 4.8. Further Information Hyperlinks for Acute HBV 4.9. Summary – sequence of serum testing in a suspected case of acute hepatitis a.. Always test for HAVIgM b.. In the East add test for HEV (if available – maybe a diagnosis of exclusion) c.. If a risk factor is present test for HBsAg and for HCVRNA (plus anti HCV) d.. Test Sequence 1.. HBc-IgM and HBsAg 2.. HAVIgM 3.. Anti-HCV 4.. HCV-RNA/ 5.. Anti HEV (only if the above are negative) 5. Acute Hepatitis C 5.1. Pathogenesis and natural cause Hepatitis C virus (HCV) is an RNA containing virus of the Flaviviridae type. The incubation period varies between 14 to 160 days with a mean of 7 weeks. Most acute and chronic infections are asymptomatic. If symptoms occur they usually last 2-12 weeks. The lack of a strong T-lymphocyte response is responsible for the high rate of chronic infection. Anti HCV is not protective (non neutralizing antibodies). Unlike the other AHV forms acute HCV is very likely to go chronic. This underlines the importance to find ways to prevent the condition becoming chronic. Standard monotherapy with alpha interferon reduces the evolution to chronic HCV to <10%. Unfortunately most acute infections are missed as they are asymptomatic, the opportunity to treat is rare therefore. 5.2. Epidemiology – prevalence and Incidence The global incidence of hepatitis C is currently unknown. Preliminaryestimates of the incidence of HCV suggest that 6400,000 HCV infection may occureach year. In the United States, it is estimated that more than 20,000 casesoccur each year. The incidence of new symptomatic infections has been estimated to be 1–3 cases/100,000 persons annually, however rates of more than 20/100,000 have been reported. The actual incidence of new infections is obviously much higher (the majority of cases being asymptomatic). The incidence is declining for two reasons: (a) transmission by blood products has been reduced to near zero; (b) universal precautions have reduced transmission in medical settings. Approximately 3% of the world's population is infected with HCV, a total of 170 million people. In the US about 4 million people have been infectedwith HCV, of these 2.7 million are estimated to have a chronic infection. 5.3. Risk factors & transmission Transmission is blood to blood. As a blood borne infection HCV may potentially be transmitted sexually mainly in individuals with other sexually transmitted diseases. Perinatal transmission is around 5%, much lower than the rates for HIV andHBV. Breast feeding does not pose a risk. Health care workers are at risk , mostly due to nosocomial transmission, (needlestick injury carries a 3% HCV risk) also at risk are incarcerated individuals and persons born in countries with high endemicity, The CDC suggests the following risks groups and categories: Table 2. HCV risks PERSONS RISK OF INFECTION TESTING RECOMMENDED? Unsterile/used needles, injecting drug users High Yes Recipients of clotting factors made before 1987 (prior to heat inactivation) High Yes Hemodialysis patients Intermediate Yes Recipients of blood and/or solid organs before 1992 Intermediate Yes People with undiagnosed liver problems Intermediate Yes Infants born to infected mothers Intermediate After 12–18 mos. Old Healthcare/public safety workers Low/intermediate Only after known exposure People having sex with multiple partners Low No* People having sex with an infected steady partner Even lower No* Nosocomial risk is about 1% - endoscopy , multiple dose vials, surgery. Persons with sexually transmitted diseases (STD), including such common ones as herpes, represent an additional risk group. Other potential risk activities include - cocaine snorting, tattoos, body piercing, Iatrogenic causes (dirty equipment), tribal scarification and mass circumcision ceremonies. 5.4. Diagnosis and differential diagnosis After initial exposure, HCV RNA can be detected in blood within 1-3 weeks. Antibodies to HCV are detected by enzyme immunoassay (EIA) only in 50-70% of cases when symptoms begin, rising to more than 90% after 3 months. Liver cell injury is manifested after 4-12 weeks by elevation of ALT levels. Acute infection can be severe but it is rarely fulminant. Studies show the risk of fulminant hepatitis is very low at < 1%. The most widely used screening tests for HCV are based on enzyme-linked immunosorbent assays (ELISA, EIA) . HCV can be diagnosed by the presence of anti-HCV in serum but antibody tests often do not give positive results for up to 3 months after acute infection. Testing for HCV RNA is the best test for making a diagnosis of acute HCV, particularly if then followed by development of anti HCV , with seroconversion observed. Polymerase chain reaction (PCR) tests detect HCV RNA in serum within 1-2 weeks after infection. ELISA for antibody testing has a 97% sensitivity. The antibody may be undetectable for up to 8 weeks after infection and acute HCV infection is usually subclinical (window phase). The antibody does not confer immunity. An assay prototype designed to detect and quantify total hepatitis C virus (HCV) core antigen (HCVcoreAg) protein in serum and plasma in the presence or absence of anti-HCV antibodies has recently been developed by industry. Investigations show that HCVcoreAg testing permits the detection of an HCV infection about 1.5 months earlier than the HCV Ab screening tests and an average of only 2 days later than quantitative HCV RNA detection in individual specimens. 5.4.1. Blood tests for acute HCV Anti-HCV: a.. PCR – HCV-RNA Note: Anti HCV does not tell whether the infection is new (acute), chronic or is no longer present. Qualitative Tests to detect presence or absence of virus (HCV RNA) a.. Generic polymerase chain reaction b.. Amplicor HCV Quantitative tests to detect titer of virus (HCV RNA) a.. Amplicor HCM Monitor b.. Quantiplex HCV RNA (bDNA) c.. TMA (most sensitive) 5.5. Acute HCV management Indications for treatment a.. Seroconversion to serum HCV RNA+ or HCcoreAg+ Early identification of HCV is important because there is evidence that early intervention with standard interferon alpha can markedly reduce therisk of chronic infection from 80% to 10%. There is no pre-exposure prophylaxis for HCV. 5.6. Prevention Immunoglobulins are ineffective in preventing HCV. There is no real effective passive or active immunization. Behavior change and limitingexposure to risk situations offers the best chance of primary prevention. 5.7. The future a) Prevention An important goal is the development of a HCV vaccine which induces cellmediated immunity. Vaccines - both therapeutic and prophylactic are in the early stages of development now. b) Therapy of acute HCV Future studies should be larger and more evidence-based and they shouldfocus on efficacy of peginterferons and when therapy should be started. a.. Start therapy immediately after diagnosis or b.. Delay start of therapy for 2–4 months to avoid treating thosewhore cover spontaneously (only in 10%–20% of cases). 5.8. Further Information References for HCV: 1.. NIH Concensus paper HCV 2.. Therapy of Acute Hepatitis C; Alberti et at; Hepatology 2002;36;s195-s200. Pubmed-Medline 3.. Centers for Disease Control 6. Acute Hepatitis D 6.1. Pathogenesis and natural cause HDV only co-occurs with HBV Hepatitis D virus (HDV) is a defective single stranded RNA virus of the Deltaviridae type. It is an incomplete RNA virus that needs the hepatitis B surface antigen to transmit its genome from cell to cell. Therefore, it only occurs in people who are positive for the hepatitis B surface antigen. Mean incubation time varies from 60-90 days but can vary as widely as 30-180 days. Because HDV relies absolutely on HBV the duration of the HDV infection is totally determined by the duration of the HBV infection. HBV replication is suppressed in most HDV-infected individuals. HDV infection can occur either as a co-infection with HBV or as a superinfection in those with chronic HBV. a.. Co-infection a.. severe acute disease b.. low risk of chronic infection c.. indistinguishable from acute HBV b.. Superinfection a.. usually develop acute exacerbation of chronic hepatitis b.. high risk of chronic liver disease 6.2. Epidemiology – prevalence and incidence There is a decreasing prevalence of both acute and chronic hepatitis D in the Mediterranean area and in many other parts of the world, which has been attributed to a decline in the prevalence of chronic HBsAg carriers in the general population. The incidence of HDV in the general Italian population has declined from 3.1/1,000,000 habitants in 1987 to 1.2/1,000,000 in 1992. However, new foci of high HDV prevalence continue to be identified as in the case of the island of Okinawa in Japan, of areas of China, Northern India and Albania. 6.3. Risk factors & transmission Modes of transmission a.. Percutaneous exposure a.. injecting drug users b.. Permucosal c.. Sexual contact The transmission mode of HDV is similar to that of HBV. The risk of fulminant hepatitis in co-infection is 5%. Otherwise the prognosis of co-infection generally is good. The prognosis for supe rinfection is variable. There is some suggestion that the chronic liver disease is more severe but this is not universally the case. 6.4. Diagnosis and differential diagnosis During acute HDV infection, HDV Ag and HDV-RNA (PCR) appear early and anti-HDV of the IgM class appears later. It may take 30-40 days after the first symptoms appear before anti-HDV can be detected. 6.4.1. Serology in the case of co-infection The serologic course of HDV infection varies depending on whether the virus is acquired as a co-infection with HBV or as a super infection of a person who is already a hepatitis B carrier. In most persons with HBV-HDV co-infection, both IgM antibody to HDV (anti-HDV) and IgG anti-HDV are detectable during the course of infection. However, in about 15% of patients the only evidence of HDV infection may be the detection of either IgM anti-HDV alone during the early acute period of illness or IgG anti-HDV alone during convalescence. Anti-HDV generally declines to sub-detectable levels after the infection resolves and there is no serologic marker that persists to indicate that the patient was ever infected with HDV. Hepatitis Delta antigen (HDAg) can be detected in serum in only about 25% of patients with HBV-HDV co-infection. When HDAg is detectable it generally disappears as HBsAg disappears and most patients do not develop chronic infection. Tests for IgG anti-HDV are no longer commercially available in the United States and Europe so it is not possible always to confirm the diagnosis. Tests for IgM anti-HDV, HDAg and HDV-RNA by PCR are only available in research laboratories. 6.4.2. Serology in the case of superinfection In patients with chronic HBV infection who are super-infected with HDV several characteristic serologic features generally occur, including: 1) the titer of HBsAg declines at the time HDAg appears in the serum, 2) HDAg and HDV RNA remain detectable in the serum because chronic HDV infection generally occurs in most patients with HDV superinfection, unlike the case with co-infection, 3) high titers of both IgM and IgG anti-HDV are detectable, which persist indefinitely. HBV replication is usually suppressed. 6.5. Acute Hepatitis D management No specific treatment is available. Some success is reported with the viral DNA polymerase inhibitor foscarnet. 6.6. Prevention a.. HBV-HDV Co-infection is prevented by vaccination against HBV b.. HBV infection HBV-HDV superinfection c.. Education to reduce risk behaviors among persons with chronic HBV infection HDV co-infection can be prevented with HBV pre- or post-exposure prophylaxis 6.7. The future It is unknown whether new delta antigen test will be developed again. 6.6. Further information Hyperlinks for HDV: 7. Acute Hepatitis E 7.1. Pathogenesis and natural cause Hepatitis E virus (HEV) is an RNA containing virus of the Caliciviridae type. The key feature is that - like HAV - it is self-limiting. Management of HEV should therefore be supportive. Hospital admission and medication are not generally necessary, except for pregnant women and those with background chronic liver disease. Average HEV incubation time is 40 days and can vary from 15-60 days. Overall case fatality is 1-3%. In pregnant women it is 15-25%. The clinical presentation of HEV is the same as for HAV. HEV Infection is self-limiting and does not require treatment 7.2. Epidemiology – prevalence and incidence Outbreaks of hepatitis E have occurred over a wide geographic area, primarily in developing countries with inadequate sanitation. The reservoir of HEV in these areas is unknown. The occurrence of sporadic HEV infections in humans may maintain transmission during inter-epidemic periods, but a nonhuman reservoir for HEV is also possible. In the United States, in Europe and other non-endemic areas, where outbreaks of hepatitis E have not been documented to occur, a low prevalence of anti-HEV (<2%) has been found in healthy populations. The source of infection for these persons is unknown. * (Note: The map of HEV infection generalizes available data and patterns may vary within countries.) 7.3. Risk factors & transmission HEV is transmitted primarily by the fecal oral route and fecally contaminated drinking water is the most frequent cause of transmission. Transmission may occur vertically. Transmission between persons is minimal.Blood-borne transmission has not been demonstrated. HEV has been implicated in large epidemics in Asia, Africa and Mexico. Young adults (20-40yr) are affected most, the prognosis is generally good except in pregnant women. Pre-exposure prophylaxis for HEV is not available. 7.4. Diagnosis and differential diagnosis Assays have been developed for HEV antigen and IgM/IgG antibodies testing but they are not widely available commercially. The virus can be identified in stool, bile and hepatocyte cytoplasm. Serologic testing for HEV is available Further information is available from the Centres for Disease Control and NIHin the US. Click here (CDC) 7.5. Acute hepatitis E management Treatment is supportive only. Pregnant women are a special risk category. Pregnant women with acute Hepatitis E Infection have a risk of fulminant liver failure of around 15% Mortality is high and varies from 5-25% in different studies. HEV infection causes mortality in up to 25% of pregnant women in the 3rd trimester of pregnancy 7.6. Prevention The best way to avoid HEV infection is to avoid using untreated drinking water Avoid drinking water or eating ice of unknown purity, uncooked shellfish and foods washed in drinking water. Currently, no HEV vaccine is commercially available. 7.7. the Future Safe drinking water and a good sanitation infrastructure are the keys to eradicating HEV infection. 7.8. Further Information Hyperlinks for HEV: 3.. Aggarwal, R. and Krawczynski, K. Hepatitis E: an overview and recent advances in clinical and laboratory research. J Gastroenterol Hepatol, 15: 9-20, 2000. Pubmed-Medline 7.9. Summary Hepatitis E occurs in annual epidemics, often during the rainy season, and is mainly associated with fecally contaminated drinking water; exceptions are food-borne epidemics (raw or uncooked shellfish). Epidemic and sporadic cases have been reported from southeast and central Asia, the Middle East, northern and western Africa and North America. Epidemics of hepatitis E are more common in parts of the world with hot climates and are rare in temperate climates. Preliminary evidence indicates that up to 40% of acute hepatitis in Egypt and India is due to HEV and hepatitis E is responsible for up to 70% of acute hepatitis in countries such as Saudi Arabia, Vietnam, Indonesia, Malaysia and Nepal. 8. Literature References 1.. EASL HBV Consensus Paper 2.. NIH Consensus paper HCV 3.. BMJ 2001;322;151; Acute Hepatitis. 4.. D Lavanchy ;Journal of Gastroenterology and Hepatology;2002;17;s452-s459. Pubmed-Medline Useful Websites for Hepatitis diagnosis and management:
1. IntroductionThere will be approximately 850,000 new cases and more than 500,000 deaths from Colorectal Cancer (CRC) world-wide this year. Risk factors for CRC include older age, family history, certain hereditary conditions, dietary factors, lack of exercise, exercise, alcohol, smoking and sedentary lifestyles. Some of these risk factors such as age cannot be changed; others such as diet require massive public education to change behavior. In the past few years, considerable evidence has accumulated that the number of people developing and dying from CRC can be dramatically reduced by screening and surveillance. This evidence has resulted in a consensus for the first time by many authoritative groups that CRC screening is effective and should be recommended. 2. DefinitionsScreening is the testing of asymptomatic individuals to determine who is likely to have adenomatous polyps or CRC. Diagnosis is the work-up of people who have a positive screening test. Surveillance is the monitoring of people who have premalignant conditions such as Inflammatory Bowl Disease (IBD) or who receive treatment for adenomatous polyps or CRC. 3. Risk Factors for CRCAll men and women with no other risk factors are at risk for CRC at age 50 and older. The risk is about equal for men and women. Although risk is also present below age 50, more than 90% of people with CRC are age 50 or older. The risk doubles with each decade. Factors that increase risk include a family history of 1 or 2 first degree relatives with CRC; Familial Adenomatous Polyposis (FAP) or Hereditary Non-Polyposis Colorectal Cancer (HNPCC); or personal history of IBD, adenomatous polyps or CRC. 4. Evidence for CRC ScreeningThere are now 3 randomized control trials that have reported a mortality reduction from CRC as a result of screening with a guaiac based Fecal Occult Blood Test (FOBT). The largest reduction is 33% with annual screening using a sensitive slide and lesser reductions (15-18%) using a less sensitive slide every other year. Recently, one trial reported a CRC incidence reduction as a result of detecting and removing adenomatous polyps. Immunochemical FOBTs have demonstrated excellent sensitivity and specificity. Two case control studies and a small prospective randomized trial have demonstrated a mortality reduction of 60-80% as a result of screening sigmoidoscopy. There are 2 large prospective randomized trials in progress (US & UK) examining mortality from screening flexible sigmoidoscopy. Several studies have demonstrated an increased yield of adenomatous polyps and cancer by combining FOBT and sigmoidoscopy but as yet a significant mortality reduction has not been reported. Two studies have reported the feasibility of screening colonoscopy in asymptomatic men (1 study) and in men and women (1 study). The studies have demonstrated that: approximately 10% of those screened have early stage cancer (1%) or advanced adenomas; complications are low; and approximately 30-50% of people with proximal neoplasia would not have been identified if only flexible sigmoidoscopy were done. Studies of effectiveness (incidence and mortality) have not been initiated as yet. There are no reports on screening barium enema. Newer techniques for screening are under study, including: virtual colonoscopy and fecal DNA markers, which provide additional screening options. 5. Evidence for CRC SurveillanceThere is strong evidence that removal of adenomatous polyps followed by colonoscopy surveillance will reduce the incidence of CRC. The follow-up surveillance intervals required can be longer than previously believed. Patients have been stratified into those at low and high risk for subsequent advanced adenomas. Double Contrast Barium Enema (DCBE) has been shown to be less accurate in detecting adenomatous polyps at follow-up. Surveillance goals after curative cancer surgery are the same as for post-polypectomy patients. IBD surveillance with colonoscopy every 1-2 years can detect early cancer and dysplasia in a high percentage of people who develop cancer with IBD. 6. Guidelines for CRC Screening and Surveillance6.1 General Guidelines: People with symptoms require a diagnostic work-up. Personal and familial factors need to be evaluated. A positive screening test requires prompt diagnostic work-up by colonoscopy and follow-up surveillance. 6.2 Screening Guidelines: All men and women age 50 and older should be offered screening for adenomatous polyps and cancer with one of the follow options: Fecal occult blood testing annually with a sensitive guaiac or immunochemicaltest, flexible sigmoidoscopy every 5 years, preferably both combined, colonoscopy every 10 years, or DCBE with flexible sigmoidoscopy every 5-10 years. People with 1 or 2 first-degree relatives with colorectal cancer or an adenomatous polyp under age 60 should be offered screening beginning at age 40 with one of the above options. A family history consistent with FAP or HNPCC requires genetic counselling, possibly genetic testing and more intense surveillance at a younger age. 6.3 Surveillance Guidelines: Following removal of an adenomatous polyp, a colonoscopy follow-up program should be initiated. In general most patients can have the first follow-up colonoscopy 3-5 years later depending on the number and pathology of the polyps. Some patients require earlier intervention if the colon is not cleared or if there are numerous polyps, or malignant polyps. After cancer surgery, a colonoscopy is usually done at 6 months to 1 year and then the follow-up is the same as for post-polypectomy. Long standing IBD requires colonoscopy for the detection of cancer and dysplasia every 1-2 years. More specific details can be obtained from the accompanying references. 7. Cost Effectiveness & Implementation of GuidelinesAll screening approaches are as cost-effective as screening mammography and costs are saved as the cost of cancer treatment rises. With strong data, and evidence-based guidelines well established, we need now to focus our attention and energy on universal implementation. This is a major effort requiring campaigns to increase public awareness and physician acceptance of colorectal cancer screening. Many groups have developed programs directed toward this goal, and can provide assistance to those interested in promoting screening in their country. As specialists in Digestive Disease, we understand the global impact that we can have today by eradicating a major cancer killer. As leaders in our respective medical communities, we need to encourage screening for colorectal cancer and adenomatous polyps in all men and women, particularly in countries where the risk is high. This is now the 'standard of practice'. 8. Literature References
9. Links to useful web-sites
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