Registry for People With Blood Disorders in the American Thrombosis and Hemostasis Network

What this Trial Is About

Researchers are gathering health information from people with blood disorders to better understand their quality of life and health outcomes. This observational study collects detailed data to help doctors, scientists, and policymakers find better ways to treat blood disorders like hemophilia, thrombosis, sickle cell disease, and others. The study is supported by the American Thrombosis and Hemostasis Network ATHN and aims to answer important scientific and public health questions. Participants health data will be collected and regularly updated in a secure registry called the ATHNdataset. Information includes demographics, diagnosis details, family history, physical exams, vital signs, lab and genetic tests, imaging results, medications, treatments, surgeries, immunizations, and patient-reported outcomes. Data is gathered from routine care visits at ATHN Affiliate centers and may be used for research, advocacy, safety monitoring, and quality improvement projects. Participants will share their health information through encounters with ATHN Affiliate care providers. The study team will analyze this comprehensive data over 15 to 20 years to support clinical care and public health reporting for the blood disorders community. All relevant health details, questionnaires, and treatment information are securely stored and used to improve understanding and management of blood disorders.

ATHNdataset Registry