What Data Is To Be Collected?
ATHN will be gathering information about patients with a wide range of bleeding and blood clotting disorders. (Some common examples are listed below.)
- Hemophilia (with and without inhibitors)
- Hemophilia A (Factor VIII deficiency)
- Hemophilia B (Factor IX deficiency)
- Other bleeding disorders due to factor deficiencies
- Factor I
- Factor II
- Factor V
- Factor VII
- Factor X
- Factor XI
- Factor XIII
- Von Willebrand Disease
- Type 1
- Type 2
- Type 3
- Thrombotic Disorders
- Protein C deficiency
- Protein S deficiency
- Factor V Leiden mutation
- Antithrombin III deficiency
- Prothrombin G20210A mutation
- Hyperhomocystinemia
- Elevated factor VIII
- Elevated factor XI
- Elevated lipoprotein
- Acquired thrombophilia
- Thrombophilia of ACA
- Platelet Disorders
- Glanzmann’s Disease
- Bernard Soulier Syndrome
- Hereditary Hemorrhagic Telangiectasia
Clearly the data points, beyond a core set collected, will vary dependent on a specific project and patient consent. Therefore, we cannot determine at this time all data points for the future, as the scope of projects required to advance patient care are dynamic not yet defined. Basic information may include: family history, risk factors, co-morbidities, allergies, diagnostic tests, treatment regimen, presence of inhibitors, procedures, bleed status, cost, access to care, utilization, outcomes, and quality of life. Over time, ATHN would be prepared to collect additional information as needed to address specific projects and research issues.
