Scleroderma Registry & Repository at the Hospital for Special Surgery

Overview

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.

Full Title of Study: “The Scleroderma Registry & Repository”

Study Type

  • Study Type: Observational
  • Study Design
    • Time Perspective: Prospective
  • Study Primary Completion Date: January 2030

Detailed 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.

Arms, Groups and Cohorts

  • Patients with Scleroderma
    • Patients who have been diagnosed at any point in their life with Scleroderma will compose the cohort.

Clinical Trial Outcome Measures

Primary Measures

  • 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.

Secondary Measures

  • 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

Participating in This Clinical Trial

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

Gender Eligibility: All

Minimum Age: 18 Years

Maximum Age: N/A

Are Healthy Volunteers Accepted: Accepts Healthy Volunteers

Investigator Details

  • Lead Sponsor
    • Hospital for Special Surgery, New York
  • Provider of Information About this Clinical Study
    • Sponsor
  • Overall Official(s)
    • Robert F Spiera, MD, Principal Investigator, Hospital for Special Surgery, New York
    • Jessica K Gordon, MD, Principal Investigator, Hospital for Special Surgery, New York
  • Overall Contact(s)
    • Eliza Pelrine, BA, (212)774-2123, pelrinee@hss.edu

Clinical trials entries are delivered from the US National Institutes of Health and are not reviewed separately by this site. Please see the identifier information above for retrieving further details from the government database.

At TrialBulletin.com, we keep tabs on over 200,000 clinical trials in the US and abroad, using medical data supplied directly by the US National Institutes of Health. Please see the About and Contact page for details.