ATHNdataset Core Data Elements

The ATHNdataset Core Data Elements represent the vast body of data that has been and continues to be collected through our 135 ATHN-affiliated hemophilia treatment centers.

Here is a sampling of the more than 150 core data elements included in the ATHNdataset:

  • Demographics – Age, gender, ethnicity, education, employment status, date of death, cause of death
  • Health services – Insurance type, ER visits
  • Diagnosis – Primary bleeding or clotting disorder, disease severity, date of diagnosis, inhibitor status, co-morbidities, age at diagnosis, age at first bleed
  • Pharmaceutical treatment – Coagulation medication, reason for use, vaccination status, allergies
  • Surgeries and procedures (including lab tests) – Factor level, inhibitor titer, diagnostic and monitoring labs
  • Objective parameters – BMI, height, weight

The breadth of the data in the ATHNdataset is increased as patients participating in the ATHNdataset also participate in other ATHN projects such as ATHN 1 – A Cross-Sectional Study of Cardiovascular Disease in the Aging Hemophilia Population, My Life, Our Future, and Community Counts, the CDC Public Health Surveillance for Bleeding Disorders project. For patients participating in the ATHNdataset and these projects, data in the ATHNdataset is updated when study forms are submitted, keeping information in the ATHNdataset current and relevant. Learn more about past and current ATHN research projects.