A Letter from the Scleroderma Family Registry and DNA Repository

Dear Friend of the Scleroderma Foundation:

On behalf of Maureen Mayes M.D., MPH, I invite you to register and become members of the Scleroderma Family Registry & DNA Repository. This NIH/NIAMS (National Institutes of Health/National Institute for Arthritis, Musculoskeletal and Skin Diseases) financed national resource has to date enrolled over 1,100 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.

The next step for our research involves the performance of a genome wide scan. The Registry currently does not have enough samples to complete this scan and so I am appealing 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 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 the Scleroderma Registry office at:

Toll free: 800-736-6864
Office: 713-500-7196
Fax: 713-500-0718
Or email Marilyn Perry at marilyn.perry@uth.tmc.edu. You may visit our Web site at http://www.uth.tmc.edu/scleroderma_reg/.

With our sincere thanks for all your support,

Marilyn Perry, B.S.
Registry Coordinator