Better data leads to better care. At ATHN, we partner with the blood disorders community, government, and industry by providing technology to manage data, support research, measure outcomes—and ultimately improve care.

Our Top Stories


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  • ATHN Transcends
    ATHN Transcends is a natural history cohort study focused on participants with congenital or acquired non-neoplastic blood disorders and connective tissue disorders with bleeding tendencies. ATHN Transcends provides clinical researchers with a uniform, secure, unbiased, and enduring method to collect long-term safety and efficacy data to increase knowledge in these important areas of research.
  • Electronic Informed Consent (eIC) and ATHN 9
    ATHN’s new eConsent portal will facilitate and streamline the informed consent process for patients in ATHN studies. The eConsent portal is currently only available for participants enrolling in ATHN 9.

National Projects

  • AI/Machine Learning Research Grant
    Pfizer has awarded ATHN a grant to research at the provider level hemophilia patients who are at risk for poor outcomes. The proposal will utilize a combination of machine learning and artificial intelligence (AI) to create a predictive model and share that knowledge with ATHN Affiliates. Contact for more information.
  • ATHNdataset
    Researchers rely on data from this vital community resource for a variety of ATHN research projects. Learn more about this safe, secure national database.
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    ATHN Data Quality Counts
    This competitive award is supported by The Hemophilia Alliance, The Alliance Pharmacy, and Indiana Hemophilia & Thrombosis Center and provides funding to enrich the ATHNdataset.
  • Access the full catalogue of ATHN works in a new, easy-to-search site.
  • Office of Public Health Initiatives
    The ATHN Office of Public Health Initiatives (OPHI) aims to leverage ATHN’s capabilities to support medically underserved populations by strengthening our partnerships throughout the blood disorders community. We’re working to establish a Health Equity Program, expand ATHN’s focus on sickle cell disease, and more.

Featured Publications

Health insurance coverage and switching among people with hemophilia A in the United States published in Journal of Managed Care + Specialty Pharmacy, November 2021. Download full article
Patient preferences and priorities for haemophilia gene therapy in the US: A discrete choice experiment published in Haemophilia, September 2021. Download full article
Real-world Effectiveness of BAY 94-9027 to Treat Hemophilia A in the ATHNdataset published in the International Society on Thrombosis and Haemostasis Congress Abstracts, July 2021. Download full article