Scleroderma Registry & Repository at the Hospital for Special Surgery

Study Overview
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Brief Summary
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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 Description
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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.

Official Title
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The Scleroderma Registry & Repository

Conditions
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Scleroderma

Participation Criteria
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Eligibility Criteria
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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

Ages Eligible for Study
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Minimum Age: 18 Years

Sexes Eligible for Study
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All

Accepts Healthy Volunteers
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Accepts Healthy Volunteers

Study Plan
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How is the study designed?
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Arms and Interventions

| Participant Group/Arm | Intervention/Treatment |
| --- | --- |
| Patients with Scleroderma<br>Patients who have been diagnosed at any point in their life with Scleroderma will compose the cohort. | |

What is the study measuring?
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Primary Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| 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 Outcome Measures

| Outcome Measure | Measure Description | Time Frame |
| --- | --- | --- |
| Scleroderma Health Assessment Questionnaire | Patient questionnaire | Baseline & follow-up visits during regularly scheduled appointments for up to 5 years | 
| Short Form-36 | Patient questionnaire | Baseline & follow-up visits during regularly scheduled appointments for up to 5 years | 

 Terms related to the study
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Keywords Provided by Centre Hospitalier Valida
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Scleroderma, Scleroderma Registry, Hospital for Special Surgery Scleroderma