Study Enrollment

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Clinical Trial

ATHN 10 Leveraging the ATHNdataset to Document the State of Rare Coagulation Disorders in the United States

This project involves collection of a blood sample and medical history information on patients with certain rare bleeding disorders. A small sample of blood (approximately 1 teaspoon) will be collected and sent to a laboratory for free genetic testing. The genes being studied in this project were chosen because they are either known or suspected to cause rare blood disorders or affect their clinical expression. Genetic Testing information: Your genes are made up of DNA. DNA is short for deoxyribonucleic acid. A gene, or DNA, contains information that determines in part the traits, such as eye color, height, or disease risk, that are passed on from parent to child. Alterations (variants or mutations) within your DNA might make you more likely to get certain diseases or affect whether a drug or treatment helps you. We will look at your DNA to potentially see what change in your genes is causing your rare blood disorder. Data Collection information: Information about your bleeding disorder, medical history, and demographics (date of birth, sex, race) will be collected. Participants in this project must also agree to participate in the ATHNdataset, which includes a de-identified data set of clinical information that can be used for research. The ATHNdataset may have information about your clotting factor level, bleeding history, treatment history, general things about you (age, race, sex), and other medical conditions you have. The national data set follows all HIPAA guidelines to protect your confidentiality.

Eligibility Criteria

  • Requirements for participation: Age 18 years or older Agree to participate in the ATHNdataset, a de-identified, HIPAA-compliant clinical database Have a specified rare bleeding disorder, which may include: Factor VII deficiency Bernard-Soulier syndrome Glanzmann thrombasthenia Factor XIII deficiency Factor I (Afibrinogenemia, Hypofibrinogenemia, Dysfibrinogenemia, Hypodysfibrinogenemia)

Contact Information

    Latanya Bowman, RN

    (706) 721-2171