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The Hemophilia Treatment Center (HTC) where you receive care is working with The American Thrombosis and Hemostasis Network (ATHN) to look at the quality of life of people with blood disorders and problems.
Doctors, scientists, policymakers, and other health care providers need a large amount of information from a lot of people to answer scientific, public health, and policy questions about better ways to treat blood disorders. They will use the information from the ATHNdataset to answer these questions.
Participants who agree to participate will let their health information be included in the ATHNdataset Registry, and the information will be updated regularly to reflect the participant's current health status. This registry includes collecting, storing and managing health information through a secure database. The following health information will be collected:
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Blood Disorders | The ATHNdataset is a large, robust real-world registry that can be queried to produce curated subsets of data to support clinical care, outcomes analysis, safety monitoring, practice of treatment, advocacy, public health reporting, quality improvement projects, and research initiatives. Initiatives relying on the ATHNdataset may focus on gaining a greater understanding of blood disorders, the complications of these disorders, their social and economic costs, and the effectiveness of treatments. The population includes all individuals diagnosed with or suspected to have a blood disorder. Participants will contribute data gathered during care encounters with an ATHN Affiliate. |
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| Measure | Description | Time Frame |
|---|---|---|
| Comprehensive real-world clinical data registry analysis, research, advocacy, and public health reporting for the blood disorders community | The ATHNdataset Registry objective is to develop a secure, comprehensive registry of real-world clinical data to support standardized comprehensive health information for persons living with blood disorders and public health reporting for the blood disorders community | 15 years |
| Measure | Description | Time Frame |
|---|---|---|
| Contribute to scientific and public health reporting for the blood disorders community | By providing a comprehensive registry for physicians, scientists, policy makers, and other health care stakeholders who require a large pool of participant information to answer questions related to blood disorders treatments | 20 years |
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Inclusion Criteria:
Exclusion Criteria:
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| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Emily Callegari, RN | Contact | 8003602846 | 124 | ecallegari@athn.org |
| Carol Fedor, RN | Contact | 8003602846 | 122 | cfedor@athn.org |
| Name | Affiliation | Role |
|---|---|---|
| Tammuella Chrisentery-Singleton, M.D. | American Thrombosis and Hemostasis Network | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| American Thrombosis and Hemostasis Network | Recruiting | Hickory | North Carolina | 28601 | United States |
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| ID | Term |
|---|---|
| D006467 | Hemophilia A |
| D013927 | Thrombosis |
| D002836 | Hemophilia B |
| D000755 | Anemia, Sickle Cell |
| D013915 | Thrombasthenia |
| D020141 | Hemostatic Disorders |
| D006402 | Hematologic Diseases |
| D014842 | von Willebrand Diseases |
| D006395 | Hemarthrosis |
| ID | Term |
|---|---|
| D025861 | Blood Coagulation Disorders, Inherited |
| D001778 | Blood Coagulation Disorders |
| D006425 | Hemic and Lymphatic Diseases |
| D020147 | Coagulation Protein Disorders |
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| D006474 | Hemorrhagic Disorders |
| D030342 | Genetic Diseases, Inborn |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D016769 | Embolism and Thrombosis |
| D014652 | Vascular Diseases |
| D002318 | Cardiovascular Diseases |
| D040181 | Genetic Diseases, X-Linked |
| D000745 | Anemia, Hemolytic, Congenital |
| D000743 | Anemia, Hemolytic |
| D000740 | Anemia |
| D006453 | Hemoglobinopathies |
| D001791 | Blood Platelet Disorders |
| D007592 | Joint Diseases |
| D009140 | Musculoskeletal Diseases |
| D006470 | Hemorrhage |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |