Overview of Research Registries

Author: Shelley Ensz. Scleroderma is highly variable. See Types of Scleroderma. Read Disclaimer

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.

Registries for Rheumatic Diseases

The National Data Bank (NDB) for rheumatic diseases: Diagnosis List. If you have been diagnosed with one or more conditions from the following list, you are eligible to participate in NDB research. If you have a diagnosis for a rheumatic disease that you do not see listed, please contact us. The NDB for Rheumatic Disease. (Also see Rheumatic Diseases)

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.

Expert Lists:
United States
U.S. & World
Research Fund
ISN Medical Advisory Board
Finding Rheumatologist
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

pharosPulmonary Hypertension Assessment and Recognition of Outcomes in Scleroderma (PHAROS): Two-Year Outcomes for Patients with Pulmonary Hypertension (PH). All PH groups had very low DLCOs, 31% of SSc patients with mPAP>25mmHg did not have PAH. PAH patients had higher mPAP and more anticentromere patients. PHA Online University, 2010.

pharosPulmonary 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.

Twins and Siblings With and Without Autoimmune Diseases

Still enrolling as of 10/15/12.

NIH Autoimmune Twins and Siblings StudyFamilies 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 Scleroderma Research Registries 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
"To do no harm…"
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U.S. and Canada Scleroderma Registries

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.

Go to PHAROS: Pulmonary Hypertension and Registry of Scleroderma
Most Recent Donors

Winn Schillberg
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!

In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.


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