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NCT01656447 Clinical Trial

Scleroderma Registry & Repository at the Hospital for Special Surgery

Scleroderma Clinical Trial

Official title:
The Scleroderma Registry & Repository

Clinical Trial Details — Status: Recruiting

Administrative data
NCT number NCT01656447
Other study ID # 2014-276
Secondary ID
Status Recruiting
Phase
First received
Last updated
Start date August 2006
Est. completion date January 2030

Study information
Verified date October 2023
Source Hospital for Special Surgery, New York
Contact Eliza Pelrine, BA
Phone (212)774-2123
Email pelrinee@hss.edu
Is FDA regulated No
Health authority
Study type Observational

Clinical Trial 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.

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.

Recruitment information / eligibility
Status Recruiting
Enrollment 300
Est. completion date January 2030
Est. primary completion date January 2030
Accepts healthy volunteers Accepts Healthy Volunteers
Gender All
Age group 18 Years and older
Eligibility 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

Study Design

Related Conditions & MeSH terms

Locations
Country Name City State
United States Hospital for Special Surgery New York New York

Sponsors (1)
Lead Sponsor Collaborator
Hospital for Special Surgery, New York

Country where clinical trial is conducted

United States, 

Outcome
Type Measure Description Time frame Safety issue
Primary Modified Rodnan Skin Score Physician score of skin thickening over 17 areas of the body. Baseline & follow-up visits during regularly scheduled appointments for up to 5 years
Secondary Scleroderma Health Assessment Questionnaire Patient questionnaire Baseline & follow-up visits during regularly scheduled appointments for up to 5 years
Secondary Short Form-36 Patient questionnaire Baseline & follow-up visits during regularly scheduled appointments for up to 5 years
See also
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Completed NCT02062125 - Calcinosis in a Single-Center Scleroderma Population
Completed NCT04588714 - Feasibility and Preliminary Effects of the Resilience-based, Energy Management to Enhance Wellbeing in Systemic Sclerosis (RENEW) Intervention N/A
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