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Researching a Disorder

By Michael R. Wasserman, MD, Chief Medical Officer, Rockport Healthcare Services, Los Angeles, CA

When a disorder is first diagnosed, the doctor often gives a handout that summarizes key points of information. People may also have some general knowledge of the disorder from newspaper or magazine articles or television or radio shows.

If people want to learn more about their disorder, many other sources of information are available. People can ask doctors, nurses, or other practitioners to tell them about the disorder or to recommend reliable sources of information. Many books provide helpful, general information about disorders. Some local, university, or hospital libraries have useful resources, including a research librarian. The Internet provides a lot of information. However, judging the credibility of these sources is not always easy (see STANDS—Commentary).

Generally, governmental medical sources are authoritative and reliable. On the Internet, reliable resources that provide a large amount of useful and accurate information to the public include the

  • National Institutes of Health (NIH)

  • Agency for Healthcare Research and Quality (AHRQ)

  • Centers for Disease Control and Prevention (CDC)

These sites also provide links to other helpful and reliable sites. Many disease-specific, patient-oriented sites (such as the National Multiple Sclerosis Society) provide information for people with a particular disorder. In contrast, sites designed to sell specific products or a specific service may be less reliable. Their information may be biased or inaccurate.

Support groups may provide helpful information, as well as psychologic support. Such groups can be found through local newspapers, phone directories, hospitals, offices of doctors or other health care practitioners, and the Internet. Most cities have support groups, sometimes for specific disorders. For example, Gilda’s Club, which is located in several cities, offers support for people living with cancer. Other people who have the same disorder or who care for someone with the same disorder may have many practical and useful suggestions for day-to-day living, such as where to find pieces of specialized equipment, what equipment works best, and how to interact with or care for someone with a disorder. Another resource is chat rooms on the Internet. Such sites enable people to communicate with one another about specific disorders and to share possible resources; however, on these sites, in particular, scientific validity of the information should not be assumed.