Scleroderma Research Program, Congressionally Directed Medical Research Programs

Vision – To combat scleroderma through a partnership of scientists, clinicians, and consumers

Mission — To fund and facilitate the most promising, highest quality research aimed at understanding mechanisms, improving therapies, and ultimately curing scleroderma for Service Members, Veterans, and the American public

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Scleroderma is a poorly understood heterogeneous disease with poor survival, no validated biomarkers, and no effective disease modifying treatment. Scleroderma or systemic sclerosis (SSc) presents as a chronic connective tissue multisystem disorder characterized by vasculopathy, autoimmunity, inflammation, and fibrosis. The prevalence of SSc is about 250 per million and the incidence is about 20 per million adults, with approximately 70,000 SSc cases in the U.S. SSc has the highest mortality rate of any systemic autoimmune disease with interstitial lung disease as the leading cause of disease related mortality. Although it strikes patients of all ages, including children, incidence is most likely between the ages of 40-60. There is a higher prevalence in some Native American populations. Congress directed that the Scleroderma Research Program (SRP) be included in the United States Fiscal Year (FY) 20 Department of Defense appropriation at $5 Million and be established as a program of the Congressionally Directed Medical Research Programs. With this new program, SRP will invest in research focusing on the prevention, detection, diagnosis, and treatment of scleroderma for the benefit of Service members, Veterans, their families, and the American public.

SRP FY20 Stake Holders Meeting Summary

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