Registry for understanding Scleroderma at the Hospital for Special Surgery
Official title: The Scleroderma Registry & Repository
Run by Hospital for Special Surgery, New York · NCT01656447 · Data updated 2026-11-12
This study is collecting health information and blood samples from people with Scleroderma to better understand the disease and improve treatment options.
Quick facts
| Study type | Observational |
|---|---|
| Ages | 18 Years and up |
| Sex | All |
| Enrollment | 300 (estimated) |
| Sponsor | Hospital for Special Surgery, New York Academic / other |
| Locations | 1 site (New York, New York) |
| Status | Recruiting |
| Started | August 2006 |
| Main results expected | January 2030 |
| Study ends | January 2030 |
| Registry record updated | November 26, 2025 |
| Trial ID | NCT01656447 on ClinicalTrials.gov |
Is this trial a fit for you?
✓Likely a good fit
Ideal candidates for this registry are individuals over 18 years of age who have been diagnosed with Scleroderma.
✕Probably not a fit
Patients who are younger than 18 years or those over 18 without a Scleroderma diagnosis will not benefit from this registry.
A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.
What this trial studies
This registry aims to enhance the understanding of Scleroderma, a complex rheumatic disease, by collecting clinical data and biological samples from patients. Participants will complete health questionnaires and may donate blood for research purposes, which is encouraged but optional. The registry will facilitate ongoing research into the clinical features, genetics, and pathobiology of Scleroderma, ultimately aiming to improve treatment options for this currently untreatable condition. Patients will also receive a thorough medical evaluation and guidance on treatment options from specialized physicians.
Why it matters
Potential benefit: If successful, this registry could lead to improved treatment strategies and better management of Scleroderma for patients.
How similar studies have gone: Other observational studies and registries have shown success in advancing understanding and treatment of complex diseases, making this approach promising.
Who can join: the full rules
Show full inclusion / exclusion criteria
Inclusion Criteria: * Individuals older than 18 years of age with Scleroderma Exclusion Criteria: * Individuals younger than 18 years of age * Individuals older than 18 years of age without Scleroderma
Where it's running
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Hospital for Special Surgery
New York, New York, United States Recruiting
Study contacts
- Principal investigator: Robert F Spiera, MD — Hospital for Special Surgery, New York
- Study coordinator: Eliza Pelrine, BA
- Email: pelrinee@hss.edu
- Phone: (212)774-2123
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How to take part
- Review the eligibility criteria above with your treating physician.
- Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
- Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.