ATHN Data Quality Counts Grant Award - Southeast Data Quality Edition

ATHNdataset Registry Abstract Study Overview Brief Summary 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. Detailed Description 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: • Demographics (e.g., age, gender, income, education/occupation) • The type of blood disorder you have • Date you were diagnosed, or symptoms began • Family history of the disorder • Testing and assessments • Physical exams • Height, weight • Vital signs, including blood pressure and heart rate • Laboratory tests (results from blood or urine testing, or biological specimens) • Genetic test results • Imaging results (X-rays, CT scans, etc.) • Pharmacokinetic testing results (how drugs are processed in the body) • Medications used and any problems with use • Types of bleeds, pain and clotting problems • Treatments that stop your bleeding or clotting problems from occurring or getting worse • Surgeries and/or procedures • Immunizations (vaccines) • Devices • Routine care visits and injuries (trauma) • Other illnesses and diseases you may have • Allergies • Patient-reported outcomes (PROs), questionnaires, and surveys • Payment details for treatment, including insurance companies and health plans