MINUTES Presentation Dr. Virginia Steen, Professor of Medicine (Rheumatology), Exhilarating, motivating, informing, encouraging….Dr. Virginia Steen’s powerful presentation was all of that and more to the 40 attendees at the Fairfax Scleroderma Support Group. Her topic covered upcoming and ongoing clinical studies. Special emphasis on was on the Raynaud-related studies, including control of finger-tip ulcers, and on pulmonary hypertension. Dr. Steen stressed that scleroderma is a complicated disease and clinical studies are extremely important to treatment. The results of these studies can provide alternatives to doctors in prescribing effective treatments. Some of the current medicines, treatments, and tests in clinical studies are expensive. For clinical study participants, the medicines, the treatments, and the tests are free. Dr. Steen summarized her talk as follows: “It is a very exciting time to have so many important studies being done in scleroderma. Only with the enthusiasm of the patients can we learn more about scleroderma and the best treatment. “ To participate in a clinical study, the contacts are:
Scleroderma Clinical Trials at Georgetown University are available for pulmonary fibrosis, skin thickening, and fingertip or digital ulcers. Detection studies (Observational) studies are available for African-American scleroderma patients. Diagnosis/ risk factors and prevention studies are available for pulmonary hypertension. For the pulmonary studies, included are the usual scleroderma tests: exam, blood tests, EKG, Echo, PFTs, CT scan, skin biopsy. For the four-month fingertip ulcers study, there is only one visit per month to Georgetown University, with a weekly phone call to discuss dosage. |