Clinical Trial: Scleroderma Registry & Repository at the Hospital for Special Surgery

Study Status: Recruiting
Recruit Status: Recruiting
Study Type: Observational

Official Title: The Scleroderma Registry & Repository

Brief 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.

Detailed Summary:

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.

Sponsor: Hospital for Special Surgery, New York

Current Primary Outcome: Modified Rodnan Skin Score [ Time Frame: Baseline & follow-up visits during regularly scheduled appointments for up to 5 years ]

Physician score of skin thickening over 17 areas of the body.


Original Primary Outcome:

Current Secondary Outcome:

  • Scleroderma Health Assessment Questionnaire [ Time Frame: Baseline & follow-up visits during regularly scheduled appointments for up to 5 years ]
    Patient questionnaire
  • Short Form-36 [ Time Frame: Baseline & follow-up visits during regularly scheduled appointments for up to 5 years ]
    Patient questionnaire


Original Secondary Outcome:

Information By: Hospital for Special Surgery, New York

Dates:
Date Received: August 1, 2012
Date Started: August 2006
Date Completion:
Last Updated: March 13, 2017
Last Verified: March 2017