ATHN Dataset Findings

Advancing research with better data through the ATHNdataset.

Hemophilia treatment centers (HTCs) and ATHN are committed to improving the quality of life for people with bleeding and clotting disorders. ATHN is helping the HTCs who are our ATHN Affiliates by building a safe, secure national database—and creating the ATHNdataset—that can be used to support research and ultimately improve care.

The ATHNdataset is a vital community resource—and it’s growing. More than 33,032 patients across the country have already signed up to be part of the ATHNdataset and share their health information, such as the type of bleeding or clotting disorder, response to treatments, genetic information, and more. It is strictly confidential—no personal identifying information is included in the ATHNdataset.

More and more, researchers are collaborating and using the data to:

  • Gain a better understanding of the clinical, social, and economic issues affecting patients and families
  • Understand the development of inhibitors and monitor trends
  • Learn more about the genetics of bleeding and clotting disorders
  • Study the effectiveness of treatments and develop standards of care
  • Closely monitor FDA-approved therapies
  • Inform advocacy, community support, and education

ATHN is pleased to share Research Report Briefs with the community. These reports are a direct result of the dedicated efforts of ATHN-affiliated HTCs and their patients. Thank you for your support and for helping to make our vision a reality.

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