Scleroderma Research Registries

Scleroderma Research Registries (MAIN MENU)

Overview of Research Registries
UK Scleroderma Registry
US: Pulmonary Hypertension Registry of Scleroderma (PHAROS)
US & Canada: Scleroderma Family Registry & DNA Repository

Overview of Research Registries

Overview of Research Registries
Scleroderma Experts
Pulmonary Hypertension Registry

Twins/Close Siblings Autoimmune U.K. Scleroderma Registries
U.S./Canada Scleroderma Registries

Overview of Research Registries

Join as many research registries as you possibly can!

You may join all of the research registries and quality of life studies that you are eligible for. It's not like clinical trials, where you are limited to just one.

Scleroderma Experts

Scleroderma Experts: EUSTAR and SCTC Worldwide Listings. Scleroderma is a rare disease so it is best to consult an expert as soon as possible to be assured of the latest treatment information, and for the opportunity to enroll in clinical trials.

Scleroderma Experts
—EUSTAR (European Countries)
—SCTC (U.S. & Worldwide)
Finding Rheumatologists (General)

ISN Medical Advisory Board
Finding Doctors (General)
Physician/Patient Relationships
About Doctors and Clinics

U.S. Morphea Registry and DNA Repository

First U.S. Morphea Registry and DNA Repository for both Adults and Children Established. Dermatologists at University of Texas Southwestern Medical Center are establishing a DNA repository aimed at people with morphea. They will collect information about other health conditions present, collect information about family history, and collect blood and skin samples to further define the genes associated with morphea and the genetic faces of morphea. Southwestern Medical Center. 05/31/07. (Also see: What is Morphea? )

Pulmonary Hypertension Registry of Scleroderma by SCTC

Pulmonary Hypertension Registry of Scleroderma (PHAROS) is a multicenter study of systemic scleroderma (systemic sclerosis) patients in the United States who are at high risk for developing pulmonary hypertension as well as those with newly diagnosed with pulmonary hypertension, by members of the Scleroderma Clinical Trial Consortium (SCTC). Posted 04-10-06. ISN.

Pulmonary Hypertension Research Registry by CoTherix

CoTherix to Initiate Clinical Registry to Study Pulmonary Arterial Hypertension. CoTherix, Inc. plans to initiate a first-of-its-kind national disease registry that will retrospectively and prospectively collect observational data to track and study the natural history and medical management of pulmonary arterial hypertension (PAH). PR Newswire. 10/24/05. (Also see: Pulmonary Hypertension)

Twins and Siblings With and Without Autoimmune Diseases

Open Enrollment (A 5-year study)

NIH Autoimmune Twins and Siblings Study Families with Twins or Siblings where one has Systemic Rheumatic Disorders (Rheumatoid Arthritis, Juvenile Rheumatoid Arthritis, Lupus, Scleroderma, or Myositis) and one does not. The goal of study 03-E-0099 is to assess why one twin or sibling developed disease and why the other brother or sister did not.

The siblings may or may not be twins, but must be of the same gender and be within a 3-year age difference. Biological parents, or, in some cases, children, will also be included in the study.

Families may enroll at the NIH Clinical Center in Bethesda, Maryland, just 9 miles north of Washington, DC or at their local physician’s office. Transportation assistance may be available and there is no charge for study-related evaluations and medical tests.

For information on the study, call the NIH patient recruiting office toll free at 1-800-411-1222 (For TTY: 1-866-411-1010). National Institutes of Health Clinical Center (NIH). 11/25/05. (Also see: Clinical Trial Open Enrollments and Causes of Scleroderma: Genetics )

U.K. Registries for Systemic Sclerosis (Scleroderma) Patients

United Kingdom: Research Registry for UK Systemic Sclerosis Patients (Royal Free Hospital). Researchers and Pharmaceutical organizations with projects and trials under consideration are also welcome to contact us.

Overview of Research Registries
Rare, but not rare enough
Difficult and deadly
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U.S. and Canada Scleroderma Registries

NIAMS Funds New Centers of Research Translation. One of the new centers is the Center for Research Translation in Scleroderma to study the molecular basis of scleroderma to understand its underlying causes using functional genomics and gene networks. Studies will involve a multiethnic cohort of scleroderma patients, as well as two mouse models of fibrosis recently developed at this center. Center will be headed by Frank Arnett, M.D. NIH News. 11/08/06.

Scleroderma Family Registry and DNA Repository Patients in the United States and Canada area are encouraged to register. This registry will help to identify clusters in certain areas or families, track the prevalence of scleroderma, and serve as a resource for scleroderma researchers. Enrollees may also be contacted to participate in clinical trials.

Overview of Scleroderma Family Registry
Purpose of the Registry

How to Enroll
Frequently Asked Questions