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Scleroderma Registry & Repository at the Hospital for Special Surgery

This study is currently recruiting participants. (see Contacts and Locations)
Verified May 2013 by Hospital for Special Surgery, New York
Information provided by (Responsible Party):
Robert Spiera, MD, Hospital for Special Surgery, New York Identifier:
First received: August 1, 2012
Last updated: May 13, 2013
Last verified: May 2013

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.


Study Type: Observational
Study Design: Observational Model: Cohort
Time Perspective: Prospective
Official Title: The Scleroderma Registry & Repository

Resource links provided by NLM:

Further study details as provided by Hospital for Special Surgery, New York:

Biospecimen Retention:   Samples With DNA

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.

Estimated Enrollment: 300
Study Start Date: August 2006
Patients with Scleroderma
Patients who have been diagnosed at any point in their life with Scleroderma will compose the cohort.

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.

Ages Eligible for Study:   18 Years and older
Genders Eligible for Study:   Both
Accepts Healthy Volunteers:   Yes
Sampling Method:   Non-Probability Sample
Study Population

All individuals older than 18 years of age who have Scleroderma


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
  Contacts and Locations
Choosing to participate in a study is an important personal decision. Talk with your doctor and family members or friends about deciding to join a study. To learn more about this study, you or your doctor may contact the study research staff using the Contacts provided below. For general information, see Learn About Clinical Studies.

Please refer to this study by its identifier: NCT01656447

Contact: Nina Paddu, BA (212)774-7194
Contact: Uzunma Udeh, BA (212)774-2123

United States, New York
Hospital for Special Surgery Recruiting
New York, New York, United States, 10021
Contact: Daniele Lerner, BA    646-714-6302   
Principal Investigator: Robert Spiera, MD         
Sub-Investigator: Jessica Gordon, MD         
Sponsors and Collaborators
Hospital for Special Surgery, New York
Principal Investigator: Robert F Spiera, MD Hospital for Special Surgery, New York
Principal Investigator: Jessica K Gordon, MD Hospital for Special Surgery, New York
  More Information

Additional Information:
No publications provided

Responsible Party: Robert Spiera, MD, Director, Scleroderma & Vasculitis Program, Hospital for Special Surgery, New York Identifier: NCT01656447     History of Changes
Other Study ID Numbers: 26069
Study First Received: August 1, 2012
Last Updated: May 13, 2013
Health Authority: United States: Institutional Review Board

Keywords provided by Hospital for Special Surgery, New York:
Scleroderma Registry
Hospital for Special Surgery Scleroderma

Additional relevant MeSH terms:
Scleroderma, Diffuse
Scleroderma, Systemic
Connective Tissue Diseases
Skin Diseases processed this record on March 03, 2015