Scleroderma Registry & Repository at the Hospital for Special Surgery

NCT ID: NCT01656447

Last Updated: 2025-11-26

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

300 participants

Study Classification

OBSERVATIONAL

Study Start Date

2006-08-31

Study Completion Date

2030-01-31

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.

Conditions

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Scleroderma

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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Patients with Scleroderma

Patients who have been diagnosed at any point in their life with Scleroderma will compose the cohort.

No interventions assigned to this group

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
Minimum Eligible Age

18 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

Yes

Sponsors

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Hospital for Special Surgery, New York

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Robert F Spiera, MD

Role: PRINCIPAL_INVESTIGATOR

Hospital for Special Surgery, New York

Jessica K Gordon, MD

Role: PRINCIPAL_INVESTIGATOR

Hospital for Special Surgery, New York

Locations

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Hospital for Special Surgery

New York, New York, United States

Site Status RECRUITING

Countries

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United States

Central Contacts

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Eliza Pelrine, BA

Role: CONTACT

(212)774-2123

Emily Bakaj, BA

Role: CONTACT

(212)774-7620

Facility Contacts

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Eliza Pelrine, BA

Role: primary

212-774-2123

Related Links

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http://www.hss.edu/scleroderma-vasculitis-center.asp

Scleroderma, Vasculitis, \& Myositis Center Website

Other Identifiers

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2014-276

Identifier Type: -

Identifier Source: org_study_id

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