Unraveling the Mystery of Sarcoidosis
In 1984 when my diagnosis of sarcoidosis was confirmed with bronchoscopy, little information was available to consumers. I was able to locate brief descriptions in medical texts. Fortunately, all that has changed. In the last decade, numerous support, information, education, and research organizations have been formed for consumers and researchers alike, many of international scope. Information on the latest medications and treatments are readily available from consumer and health organizations and publications, pharmaceutical companies, medical publications, and the Internet.
The National Institutes of Health (NIH) is the premier national, government agency coordinating sarcoidosis research. The National Lung, Heart, and Blood Institute (NLHBI) of NIH is currently collaborating with ten of the best medical institutions in the country on sarcoidosis research. They are conducting clinical trials in four areas: 1) the relationship of genetics and the environment for African Americans, 2) treatment of pulmonary sarcoidosis with pentotoxifylline, 3) the genetics involved in the development of lung disease (sarcoidosis is one of five conditions being studied), and 4) evaluation and treatment of patients with inflammatory eye disease.
NIH's Clinical Center is a good place to start to learn about research and clinical trials. The site explains standards for studies, roles of participants and researchers, and other useful information, and, includes a link to the clinical trials website. This website (clinicaltrials.gov) explains all the clinical trials in detail and offers links to WebPages and protocols. You will find specifics on how to participate, such as eligibility, need for referral letter from physician, as well as phase and type of study. The four studies are in different phases and continue to recruit for participants. You can cross-reference information on studies by visiting the websites of participating medical institutions and the NIH.
Both private and non-government sponsored public institutions also conduct research. Pharmaceutical companies conduct an endless array of research on drugs and have recently begun to market drugs directly to the public rather than via the physician. The Sarcoidosis Journal and other professional publications report on research being conducted at the international level.
There are several ways to participate in research as a consumer/patient. A clinical trial is one way. Several organizations and foundations have been established to support research efforts and disseminate research results to the public. This is not an endorsement of any particular organization. You will need to do your own research before making financial or other contributions. Some pharmaceutical companies solicit survey participants.
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