Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
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.
What will be asked of you:
Benefits to Patients:
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Patients with Scleroderma | Patients who have been diagnosed at any point in their life with Scleroderma will compose the cohort. |
Not provided
| 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 |
| 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 |
Not provided
Inclusion Criteria:
Exclusion Criteria:
Not provided
Not provided
Not provided
All individuals older than 18 years of age who have Scleroderma
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Eliza Pelrine, BA | Contact | (212)774-2123 | pelrinee@hss.edu | |
| Emily Bakaj, BA | Contact | (212)774-7620 | bakaje@hss.edu |
| Name | Affiliation | Role |
|---|---|---|
| Robert F Spiera, MD | Hospital for Special Surgery, New York | Principal Investigator |
| Jessica K Gordon, MD | Hospital for Special Surgery, New York | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Hospital for Special Surgery | Recruiting | New York | New York | 10021 | United States |
Not provided
| Label | URL |
|---|---|
| Scleroderma, Vasculitis, \& Myositis Center Website | View source |
Not provided
Not provided
| ID | Term |
|---|---|
| D045743 | Scleroderma, Diffuse |
| ID | Term |
|---|---|
| D012595 | Scleroderma, Systemic |
| D003240 | Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D012871 | Skin Diseases |
Not provided
Not provided
Not provided
Not provided
Not provided
Research bloods will be collected if the patient gives permission. These bloods can be donated at the time of a patient's private visit with a physician at Hospital for Special Surgery, or at an independent research visit.
| Baseline & follow-up visits during regularly scheduled appointments for up to 5 years |