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

The promise of using data to advance clinical care and scientific discovery relies on data that is complete and accurate. The ATHN Data Quality Counts Grant provides the critical funding needed to build data management capacity across the ATHN Affiliate Network and enrich the ATHNdataset.

Thank You to Our Partners
The ATHN Data Quality Counts Grant is made possible by the generous support of The Hemophilia Alliance, The Alliance Pharmacy, and the Indiana Hemophilia and Thrombosis Center. We are grateful to our partners for supporting the ATHN Data Quality Counts Grant, which provides critical funding to ATHN Affiliates to enhance their data management capacity and enrich the ATHNdataset in support of blood disorders related clinical care, advances in public health, and quality improvement.

Awards
Awards are competitive. Successful applicants receive base funding plus additional funding depending on the number of records in which ATHNdataset Core Data Elements are updated in ATHN Systems during the award cycle.

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

Requirements
All recipients are required to use reasonable efforts to enrich the ATHNdataset as follows:

1. Offer participation in the ATHNdataset to all persons with blood disorders under the care of the Awardee’s treatment center.
2. Contribute validated data to the ATHNdataset by inputting and submitting ATHNdataset Core Data Elements for all participants who authorize participation in the ATHNdataset. Please download the ATHNdataset Core Data Elements. Round 16 priority populations include:
   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:
     • Including patients with a range of severities
     • Patients who have received or who have expressed interest in receiving a gene therapy
     • Previously untreated patients
     • Patients with a history of or at high risk for inhibitors
   • Patients receiving non-factor products (e.g., Hemlibra or other non-factor products that may come to market during the reporting period)
   • Patients with Type 3 von Willebrand disease (VWD) and patients with clinically severe VWD requiring recurrent use of factor concentrates
   • 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 especially those with Antithrombin deficiency, Glanzmann thrombasthenia (GT), Plasminogen deficiency, Factor VII deficiency, and Factor XIII deficiency

Please download this list of current ATHNdataset core data elements.

The deadline for submission is September 20, 2024.

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