Scleroderma Registry & Repository At the Hospital for Special Surgery

Last updated: November 15, 2024
Sponsor: Hospital for Special Surgery, New York
Overall Status: Active - Recruiting

Phase

N/A

Condition

Scleroderma

Treatment

N/A

Clinical Study ID

NCT01656447
2014-276
  • Ages > 18
  • All Genders
  • Accepts Healthy Volunteers

Study Summary

The overall objective of the Scleroderma Registry is to support and promote the basic science and clinical research of this complex rheumatic disease at the Hospital for Special Surgery (HSS). The registry facilitates our understanding of the clinical features, pathobiology, genetics of Scleroderma. This will ultimately lead to a potential treatment for this currently untreatable condition.

Eligibility Criteria

Inclusion

Inclusion Criteria:

  • Individuals older than 18 years of age with Scleroderma

Exclusion

Exclusion Criteria:

  • Individuals younger than 18 years of age

  • Individuals older than 18 years of age without Scleroderma

Study Design

Total Participants: 300
Study Start date:
August 01, 2006
Estimated Completion Date:
January 31, 2030

Study 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 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.

Connect with a study center

  • Hospital for Special Surgery

    New York, New York 10021
    United States

    Active - Recruiting

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