The Statement on Sarcoidosis of the World Association of Sarcoidosis and Other Granulomatous Disorders (WASOG) reports that scientists have conducted a significant amount of research on the clinical course, pathology, and immunological aspects of sarcoidosis. Less is known about the epidemiology and genetic factors.
For those of us coping on a daily basis with the symptoms of the disease and the side effects of medications, research efforts seem not to be enough. Sometimes it is useful to understand where we have been to better appreciate where we are. This brief review of the history of sarcoidosis research illustrates that wide-scale research efforts are fairly new.
While Jonathan Hutchinson, an English physician, is credited with documenting the condition that later became known as sarcoidosis, we can imagine that the mystery has been with us since the beginning of time. WASOG describes sarcoidosis are a “systemic granulomatous disease that primarily affects the lung and lymphatic systems.” We can thank scientists for getting us from Hutchinson’s observations in 1877 of “multiple, raised, purplish cutaneous patches on the hands and feet…” thought initially to be attributed to gout, and later to represent ” a form of skin disease,” to WASOG’s definition 122 years later.
Caesar Boeck, the nephew of a Norwegian dermatologist, Carl Boeck, who first illustrated sarcoid lesions in sailors, first used the term ’sarkoid” in an 1899 report describing skin lesions that resembled benign sarcoma. But, it was his subsequent research and publications that gradually revealed the systemic nature of the disorder. Boeck, along with other dermatologists and scientists from other specialties and parts of the world, including France, Germany, Denmark, and Sweden, made their discoveries known in the late 19th and early 20th Centuries.
The mid-20th Century ushered in the age of steroid treatment for sarcoidosis, followed by 30 years of research on its effectiveness in treating pulmonary sarcoidosis. This was made possible by the development of the radiographic staging system, which helped to account for the spontaneous remissions often observed in early stages of some of the syndromes. The invention of fiberoptic bronchoscopy in the 1970’s allowed for the diagnosis of sarcoidosis to be confirmed.
Carl Boeck attempted the first international collaboration in the late 1800’s when he sent his drawings of the lesions of Norwegian sailors to Hutchinson, who failed to publish them. It was not until 1958 that the first International Meeting was held, with very poor attendance. Five years later, an International Committee on Sarcoidosis was formed, resulting in increased collaboration, research, and publication. A Medline search reveals 6500 publications related to sarcoidosis since 1965. The International Committee began publication of the Sarcoidosis Journal in 1984, furthering the dissemination of ideas and research related to sarcoidosis. WASOG was formed in 1987 and published the Statement on Sarcoidosis in 1999. It’s 7th Congress is scheduled for June 2002 in Sweden.
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.
Finally, some of the best research results from what we do as consumers of information, medications, and other sarcoidosis treatments. Following a treatment regimen, monitoring the effects of the regimen, and reporting your responses to your physician is one way for scientists to collect data about the effectiveness of the treatments provided. And, for you to become an educated consumer with more control over your health.
Article Source: Suite101
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