Scleroderma Registry & Repository at the Hospital for Special Surgery

Summary

Participation Requirements

Description

What will be asked of you: Completion of 2 health questionnaires Donation of research bloods. This is optional, but encouraged (if possible). We also encourage patients who come for initial visits to return so follow-up data can be collected. Benefits to Patients: The HSS Scleroderma Registry gives ...

What will be asked of you: Completion of 2 health questionnaires Donation of research bloods. This is optional, but encouraged (if possible). We also encourage patients who come for initial visits to return so follow-up data can be collected. Benefits to Patients: The HSS Scleroderma Registry gives patients the opportunity to participate in observational research with the goal of improving the lives of patients in the future. By donating research bloods and providing clinical information, patients will help generate new knowledge about Scleroderma that can guide the treatment and care of patients afflicted with this rare disease. Patients will also receive a comprehensive, medical evaluation from an HSS physician who specializes in treating Scleroderma. He or she will provide guidance on treatment options and recommendations for current or upcoming clinical trials. Physicians will also make patients aware of the resources available to them, including support groups and educational programs.

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