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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Thrombotic thrombocytopenic purpura, congenital


Other Names for this Disease

  • Microangiopathic hemolytic anemia
  • Microangiopathic hemolytic anemia, congenital
  • Schulman-Upshaw syndrome
  • Thrombotic microangiopathy, familial
  • Thrombotic thrombocytopenic purpura, familial
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Research

Clinical Trials & Research for this Disease

  • The Rare Thrombotic Diseases Consortium aims to improve the lives of people with antiphospholipid antibody syndromes, heparin-induced thrombocytopenia, paroxysmal nocturnal hemoglobinuria, catastrophic antiphospholipid antibody syndrome (thrombotic storm), and thrombotic thrombocytopenic purpura (TTP) through research.

    For more information, please contact:

    Sharon Hall
    Research Analyst
    Hemostasis and Thrombosis Research Center
    Duke University Health System
    P.O. Box 3422 DUMC
    315 Trent Dr. Rm 273
    Durham, NC 27710
    Lab: 919-668-6329
    Office: 919-681-9565
    Fax: 919-681-6531
    E-mail: Sharon.hall@duke.edu

  • The Research Portfolio Online Reporting Tool (RePORT) provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH), including information on NIH expenditures and the results of NIH-supported research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, enter the disease name in the "Text Search" box. Then click "Submit Query".

Patient Registry

  • ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.

General Clinical Trials & Research

  • NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.
Other Names for this Disease
  • Microangiopathic hemolytic anemia
  • Microangiopathic hemolytic anemia, congenital
  • Schulman-Upshaw syndrome
  • Thrombotic microangiopathy, familial
  • Thrombotic thrombocytopenic purpura, familial
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.