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Genetic and Rare Diseases Information Center (GARD)

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Cleft hand absent tibia

Other Names for this Disease
  • Aplasia of tibia with ectrodactyly
  • Ectrodactyly with aplasia of long bones
  • Split-hand/foot malformation with long bone deficiency
  • Tibial aplasia with split-hand/split-foot deformity
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Clinical Trials & Research for this Disease

  • The Centers for Mendelian Genomics program is working to discover the causes of rare genetic disorders. For more information about applying to the research study, please visit their website.

Patient Registry

  • The Genetic Analysis of Limb Malformation Disorders is a research project and patient registry that aims to better understand the cause of congenital contractures. Click on the link above to learn more.

    Genetic Analysis of Limb Malformation Disorders
    Bamshad Laboratory
    University of Washington SOM
    Department of Pediatrics
    Division of Genetics & Developmental Medicine
    1959 NE Pacific St. HSB RR349 B
    Seattle, WA 98195-6320 USA

    Maggie McMillin, Research Study Coordinator
    E-mail 2:
    Phone: 206-221-3849
  • 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.