Clinical assessment of patients with scleroderma – SSc registry and biorepository

Scleroderma is a complex and very heterogeneous disease with multiple different subsets, antibodies, types of organ involvement, and outcomes. In order to better understand our patients better, we are embarking on a project to clinically characterize patients seen in the URMC scleroderma clinic using standardized and objective measures so that we can perform high quality clinical research and answer questions in a robust way.  This will teach us more about what scleroderma looks like in Rochester and provide a critical database with which to build clinical research studies.  In addition, our IRB-approved registry is linked to a bio-repository in which we collect blood samples which will enable us to perform biomarker, genetic/genomic, and cell based assays to better understand scleroderma.