ATHN Data Quality Counts is helping ATHN Affiliates enrich the ATHNdataset.

The promise of using data for research, surveillance, and quality improvement relies on data that is complete and accurate. ATHN Data Quality Counts provides the critical funding needed to build data management capacity across the ATHN Affiliate Network and enrich the ATHNdataset.

The application phase of Round 13 of ATHN Data Quality Counts (DQC) is now closed.

Thank You to Our Partners
ATHN has invested millions of dollars on the Data Quality Counts program to support the ATHN Affiliate Network. We are grateful to The Hemophilia Alliance, The Alliance Pharmacy, and the Indiana Hemophilia and Thrombosis Center for making Data Quality Counts possible through their generous funding support.

Awards are competitive. Successful applicants receive base funding plus additional funding depending on the number of records in which ATHN core data elements are updated in ATHN Systems during each specified 6-month period of the award cycle

Applicant organizations must be an ATHN Affiliate in good standing and a current user of ATHN Systems.

All recipients are required to address these two priorities:

  1. Contribute Validated Data to the ATHNdataset
    As in previous cycles, all participants with bleeding and thrombotic disorders are eligible. Priority populations for this cycle include:
    • Factor VIII or IX deficient participants with a focus on:
      • Previously untreated and minimally treated participants
      • Participants born after January 1, 2010
      • Participants with a history of or at high risk for or who currently have an inhibitor
    • Participants with Type 3 Von Willebrand Disease (VWD) and participants with clinically severe VWD requiring recurrent use of factor concentrates
    • Participants receiving non-factor products (e.g., Hemlibra or other non-factor products that may come to market during the reporting period)
    • Participants under the age of 18 years old who have had a VTE and are being treated with direct oral anticoagulants and all pediatric participants diagnosed with a pulmonary embolism
    • Participants with rare coagulation disorders including: Antithrombin deficiency, Factor V deficiency, Factor VII deficiency, Factor XIII deficiency, Factor X deficiency, Factor XI deficiency, Glanzmann thrombasthenia, and Plasminogen deficiency
    • Participants who have undergone liver transplantation
  2. Enter Complete Set of Core Data Elements
    Enter complete core data elements for priority population participants including but not limited to the following:
    • Primary bleeding or clotting disorder diagnosis
    • Diagnosis baseline lab value
    • Inhibitor diagnosis status
    • Inhibitor titers
    • HIV and hepatitis diagnosis status
    • COVID-19 diagnosis status, primary medication regimen and dose details
    • Primary medication regimen and dose details
    • ITI regimen (if applicable)
    • Surgeries/procedures
    • Insurance category type
    • Comprehensive care visit dates and tele-health visit information
    • Gender identity and sex assigned at birth
    • Height
    • Weight
    Please download this list of current ATHNdataset core data elements.

If you have any questions about Data Quality Counts, contact