ATHN Data Quality Counts is helping HTCs 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 network of HTCs and enrich the ATHNdataset.

The application phase of Round 12 of ATHN Data Quality Counts is now closed.

Thank You to Our Partners
ATHN has invested over $5.4 million through 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 the Data Quality Counts program possible through their generous funding support.

Awards
Awards are competitive. Successful applicants receive an initial $2,500 for base funding, plus $50 per patient after the ATHN core data elements are entered into ATHN Systems.

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

Requirements
All recipients are required to address these two priorities:

  1. Contribute Validated Data to the ATHNdataset
    As in previous cycles, all patients with bleeding and thrombotic disorders are eligible. Priority populations for this cycle include:
    • Factor VIII or IX deficient patients with a focus on:
      • Previously untreated patients
      • Patients born after January 1, 2010
      • Patients with a history of or at high risk for or who currently have an inhibitor
    • Patients with Type 3 von Willebrand disease (VWD) and patients with clinically severe VWD requiring recurrent use of factor concentrates
    • Patients receiving non-factor products (e.g., Hemlibra or other non-factor products that may come to market during the reporting period)
    • Patients under the age of 18 years old who have had a VTE and are being treated with direct oral anticoagulants and all pediatric patients diagnosed with a pulmonary embolism
    • Patients with rare coagulation disorders including: Antithrombin Deficiency, Factor I (Afibrinogenemia, Hypofibrinogenemia, Dysfibrinogenemia, Hypodysfibrinogenemia), Factor VII deficiency, Factor XIII deficiency, Bernard-Soulier syndrome (BSS), and Glanzmann thrombasthenia (GT).
    • Patients who have undergone liver transplantation
  2. Enter Complete Set of Core Data Elements
    Enter complete core data elements for priority population patients including but not limited to the following data elements: 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; ITI regimen if applicable; surgeries/procedures; insurance category type; comprehensive care visit dates and tele-health visit dates; gender identity and sex assigned at birth; height; and weight.

    Please download this list of current ATHNdataset core data elements.

If you have any questions about Data Quality Counts, contact support@athn.org.