ATHN 12: ATHNdataset Hereditary Antithrombin Deficiency (HAD) Pilot Project

Hereditary antithrombin deficiency (HAD) is a major risk factor for the development of venous thromboembolism (VTE) in adults and children. The purpose of ATHN 12: HAD Pilot Project is to collect data on patients diagnosed with HAD across the United States to better understand this rare condition and to inform the development of guidelines regarding proper time of screening for HAD, type of antithrombotic therapy, and adequate use of antithrombin concentrate.

In collaboration with Maria DeSancho, MD, ATHN is leveraging the ATHNdataset and its existing data collection infrastructure to identify patients from ATHN-affiliated sites for ATHN 12.

The project includes both pediatric and adult patients with a diagnosis of hereditary antithrombin deficiency with and/or without thrombosis. (Patients with acquired antithrombin deficiency will not be included.) ATHN is supporting the collection and validation of a core set of data for approximately 100 patients who are currently receiving care at ATHN-affiliated centers. The core set of data includes:

  • Year of birth
  • Biological sex
  • Race
  • Ethnicity
  • Most recent height and weight (including dates)
  • Data of HAD diagnosis
  • Type of thrombotic events, locations, dates, risk factors
  • Anticoagulation medication history
  • Antithrombin concentrate administration
  • History of surgeries/procedures
  • History of pregnancies and outcomes
  • History of hospitalizations due to thromboembolic events

To learn more about ATHN 12: HAD Pilot Project, email