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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
Sponsor:
Information provided by (Responsible Party):
Robert Spiera, MD, Hospital for Special Surgery, New York
ClinicalTrials.gov Identifier:
NCT01656447
First received: August 1, 2012
Last updated: May 13, 2013
Last verified: May 2013

August 1, 2012
May 13, 2013
August 2006
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Complete list of historical versions of study NCT01656447 on ClinicalTrials.gov Archive Site
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Scleroderma Registry & Repository at the Hospital for Special Surgery
The Scleroderma Registry & Repository

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:

  • 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.
Observational
Observational Model: Cohort
Time Perspective: Prospective
Not Provided
Retention:   Samples With DNA
Description:

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.

Non-Probability Sample

All individuals older than 18 years of age who have Scleroderma

Scleroderma
Not Provided
Patients with Scleroderma
Patients who have been diagnosed at any point in their life with Scleroderma will compose the cohort.
Not Provided

*   Includes publications given by the data provider as well as publications identified by ClinicalTrials.gov Identifier (NCT Number) in Medline.
 
Recruiting
300
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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
Both
18 Years and older
Yes
Contact: Nina Paddu, BA (212)774-7194 paddun@hss.edu
Contact: Uzunma Udeh, BA (212)774-2123 udehu@hss.edu
United States
 
NCT01656447
26069
No
Robert Spiera, MD, Hospital for Special Surgery, New York
Hospital for Special Surgery, New York
Not Provided
Principal Investigator: Robert F Spiera, MD Hospital for Special Surgery, New York
Principal Investigator: Jessica K Gordon, MD Hospital for Special Surgery, New York
Hospital for Special Surgery, New York
May 2013

ICMJE     Data element required by the International Committee of Medical Journal Editors and the World Health Organization ICTRP