(Article for Gathered View - March 2002)

Beware of Medical Advice Over the Internet

By Daniel J. Driscoll, Ph.D., M.D.
Co-Chair, Clinical Advisory Board
and
Merlin G. Butler, M.D., Ph.D.
Chair, Scientific Advisory Board

There is now a wealth of medical information available at our fingertips over the Internet. But how good is this information really? Well, some of it is accurate, but much of it reflects unsubstantiated claims. In general, anyone can post information without it being verified. There is a real danger that families will accept as gospel information available on the Web and spread this potential misinformation to friends and others over the Internet.

Any information on the web needs to be carefully evaluated. First, assess whether the "source" of this information is reliable. An initial screen should investigate the source of the information (i.e., whether it is a "non-profit" organization such as PWSA (USA), the National Institutes of Health, an academic institution such as a university, or a "for profit" organization.) Also, assess the motivation for the posting of the information.

If it is for a new treatment, the reader needs to ask several questions: Have clinical trials been done and published? Was it published in a respected medical journal? Were the results significant? Did other groups obtain the same results? What are the possible side effects of the treatment? Is it better than the usual treatment? Are the suggested medications approved (and therefore regulated) by the Food and Drug Administration (FDA)? An example of a successful medical treatment for PWS fulfilling all of the above criteria would be growth hormone therapy for our children with PWS.

For most parents, medical research does not move fast enough. However, this is not because researchers are not working hard searching for solutions. In the last 20 years there has been remarkable progress in our understanding of PWS. Our children are being diagnosed and treated much earlier. Parents with adult-aged children with PWS can identify significant differences in diagnosis and clinical management of today's children with PWS versus what they went through years ago.

The first rule in Medicine is to "Do no harm." We should all remember the "thalidomide story" in the 1950s, where babies exposed to this medication during pregnancy were born with terrible birth defects. We all want cures as quickly as possible, but we need to ensure that before using new medicines that they have been appropriately tested. This is not the easy route, but it is the safest.

Remember, ask your health professional and do your own "research" before accepting or starting new treatments. We all want the best for our children. Sometimes "the best" involves waiting for reliable data! The Web can be a good starting point to gather information, but don't let it be your last point.