Clinical trial Recruiting at 1 site Observational Ages 18 and up

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 typeObservational
Ages18 Years and up
SexAll
Enrollment300 (estimated)
SponsorHospital for Special Surgery, New York
Academic / other
Locations1 site (New York, New York)
StatusRecruiting
StartedAugust 2006
Main results expectedJanuary 2030
Study endsJanuary 2030
Registry record updatedNovember 26, 2025
Trial IDNCT01656447 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

  • 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

Similar studies

Other studies for the same condition or treatment. Recruiting studies are listed first.

How to take part

  1. Review the eligibility criteria above with your treating physician.
  2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
  3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.
Last reviewed 2026-11-14 by the Find a Trial editorial team. Information on this page is for educational purposes and is not medical advice. Always consult qualified healthcare professionals about clinical trial participation.