< < Story continued from previous screen

After you get the hang of finding things, the Web can be a very useful tool.

"Three years ago, I had never been on the Internet," Welsh says. "I had used computers, but this was something totally new and it was a little bit intimidating at first. But once you learn to use the search engines and that kind of thing and surf around that way, it's so easy. And now I guarantee you that I could probably find anything that you wanted me to find."

Unfortunately, finding information on the Web is just half the battle. Finding accurate information, a need that's particularly important in health-related issues, is the real battle.

An important thing to realize is that anyone can produce a Web site or Web page that looks very professional. So, lacking a science or medical degree, how does one go about evaluating the quality of health information on a Web site?

1. Reliability of the site: A reliable site will clearly disclose what group or person maintains the site, and will display a phone or e-mail contact, and a statement of the site's goals. If the site asks for any personal information, a privacy policy should be posted. If the site is selling any products, look for a statement verifying the line between editorial and advertising content. Be aware that sites brought up first by a search engine aren't necessarily the most authoritative.

2. Accuracy of health-related information: Although accurate information could potentially be found on any Web site, your confidence will be increased by noting the credentials of the people or organization supplying the information. All health-related information should be clearly dated and references or links to the primary scientific literature in which the information was originally published should be included (anecdotal information, while certainly not worthless, should be recognized for what it is: one person's informed or not-so-informed perspective).

And, finally, if it sounds too good to be true... Use a healthy dose of skepticism when evaluating unusual information.

In general, health sites maintained by the federal government, universities, research centers, hospitals and respected national associations are likely to contain the most accurate information. Also, many of the large commercial health sites, like WebMD.com, have scientific and medical advisers who review the information on their sites.

Be a bit more wary of sites whose primary goal is to sell products, or sites that are run by a small group or an individual. Although the information on these sites may be perfectly accurate, you should be especially alert to the features of good sites mentioned above.

Enright-Ford avoids sites that haven't been updated in over a year and notes particular warning signs. "Overly emotional sites, while perhaps very cathartic for the designer, are not usually good sources for sound research. I think support groups and chat outlets are very important, but not helpful when I am looking for data. Sites with very dramatic claims that I have not seen discussed in the peer-reviewed literature are also a red flag. I always keep in mind that anyone can set up a Web site; the user must truly be a careful consumer of information."

Although not by any means a comprehensive list, here are some places to start looking:

Muscular Dystrophy Association (www.mda.org)

The largest association site dedicated to neuromuscular disease, the MDA site features extensive research and medical information. Special features include breaking research news in "What's New," database of research article summaries listed by disease category and linked to their original published abstracts; database of neuromuscular disease clinical trials; current and back issues of Quest and The ALS Newsletter, and many other publications, including the 170-page Journey of Love: A Parent's Guide to Duchenne Muscular Dystrophy; and the MDAchat feature, which allows groups to discuss specific topics in real time, either among themselves or with an expert guest.

Other Association Sites

Association sites can be excellent sources of health and medical information on specific disorders. In general, the sites of established national associations such as MDA or the American Heart Association are more reliable than those of small or local groups. As the number of small organizations has skyrocketed in the last several years, many new Web sites have sprung up to support them. Be sure to check the credentials of association sites.

REHABinfo Network:

Neuromuscular Diseases Clearinghouse (medpmr.ucdavis.edu)
This excellent site is maintained by the University of California, Davis. Designed for those living with neuromuscular disorders, the site contains medical and scientific information from many different sources (including MDA) at various technical levels.

The site also features a comprehensive "Tools for Daily Living" section (links to tips on alternative medicine, disability rights, travel, etc.), updated research news, a "reading room" and more. This site makes an excellent addition to the MDA Web site, for both newbies and advanced searchers.

ClinicalTrials.gov (clinicaltrials.gov)

PubMed (www.ncbi.nlm.nih.gov)

Maintained by the National Library of Medicine under the auspices of the NIH, PubMed is a free, searchable database of the primary health and medical-related scientific literature. This is the same database used by doctors and researchers to find data on particular topics.

If you type in keywords, such as "Charcot-Marie-Tooth disease," you'll be presented with a list of journal articles that include this keyword. Clicking on an item in the list will bring up the short "abstract" or summary of the article. The information in the abstract is usually fairly technical, but PubMed has recently provided excellent tools to help the determined layperson.

If you choose the "books" option at the top of this screen, keywords in the abstract will become highlighted. You can then click on any of these terms and you'll be taken to an explanation of the term from the classic textbook The Molecular Biology of the Cell.

PubMed is a useful tool for tracking down the scientific basis, if any, of that tantalizing bit of information that you read on a not-so-well-documented Web site. (If you want more than the abstract, see hints at http://www.ninds.nih.gov/health_and_medical/obtain_biomed_articles.htm for obtaining the whole paper.)

Neuromuscular Disease Center (www.neuro.wustl.edu/neuromuscular)

Maintained by MDA Clinic Director Alan Pestronk at the Washington University School of Medicine, the Neuromuscular Disease Center site contains comprehensive information in outline form on even the rarest neuromuscular disorders. The site is somewhat technical and is designed for scientific and medical personnel, but it contains more details about disorders and their subtypes (including symptoms, rates of progression and specific genetic defects) than any other site. The site is easily searched by keyword or browsing topics.

Online Mendelian Inheritance in Man (OMIM) (www3.ncbi.nlm.nih.gov/Omim)

This site maintained by the National Center for Biotechnology Information (a department within NIH) is a database of human genes and genetic disorders. Comprehensive entries under each genetic disorder contain extremely technical summaries of the published scientific literature on the subject to date. Each entry also includes a brief clinical synopsis of the disorder. The site is probably far more useful to researchers than to health-care professionals or laypersons.

Commercial Health Sites

Commercial health sites are businesses that operate somewhat like TV stations. They make money (or hope to) by providing content that attracts visitors to their sites and then selling advertising space aimed at those visitors. Many of these sites are reviewed by medical and health professionals, and their privacy and advertising policies are usually clearly stated.

For general health information, these user-friendly sites can be excellent resources. They usually offer chat sessions with experts, information about clinical trials, healthy lifestyle tips and detailed information about common disorders.

Although a good place to start, these sites tend to lack detailed information on the neuromuscular disorders. WebMD and YourHealth seem to have the most neuromuscular disease information.

QuackWatch (www.quackwatch.com)
This site, maintained by Stephen Barrett, a retired doctor from Allentown, Pa., takes on the huge subject of medical quackery on the Web and elsewhere. The carefully referenced topic list includes everything from aroma therapy to chelation to the Food and Drug Administration's top 10 health frauds of 1999.

If you hear something that sounds too good to be true, you might want to check it out on this site. Be forewarned that the site isn't particularly friendly to alternative medicine, and those with a more spiritual approach to life may find it narrow-minded.