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A Letter from the Scleroderma Family Registry and DNA Repository
 On behalf of Maureen Mayes M.D., M.P.H., I invite you to register and become a member of the Scleroderma Family Registry and DNA Repository. The registry is financed by National Institutes of Health/National Institute for Arthritis, Musculoskeletal and Skin Diseases (NIH/NIAMS), and has enrolled more than 2,500 scleroderma patients.
Thanks to these samples, we have made some strong associations with a small group of genes and are in the process of publishing these results from the Genome Wide Scan.
The next step for our research involves the further testing to identify the genes and determine what role they play in the cause of scleroderma. The Registry currently does not have enough samples to complete this work. Today, I appeal to those patients not currently in the Registry to join. Our goal is to recruit 4,000 samples. We can accomplish this with your help.
We need individuals in the following categories:
- Individuals diagnosed with systemic forms of scleroderma.
- Friends (not family related) without any autoimmune disease to serve as healthy controls, age-matched to patient donors. We have a critical need for participants in this category.
Please spread the word to let others know we are making progress searching for the genetic factors that underlie scleroderma, and that we need their help.
For details and an enrollment form, please contact us toll-free at (800) 736-6864 or (713) 500-7196. You also can learn more online at www.sclerodermaregistry.org or email us at sclerodermaregistry@uth.tmc.edu.
We sincerely thank you for all your support,
Marilyn Perry, CCRP
Coordinator, Scleroderma Registry
University of Texas Health Science Center
Houston, TX, 77030
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