Working together to leverage data and drive research to improve care

Our Top Stories

Research

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  • ATHN Transcends
    As ATHN’s flagship observational study, ATHN Transcends streamlines data collection and administration for our ATHN Affiliates, while supporting investigators in the exploration of scientifically meaningful questions to determine the safety, effectiveness, and practice of therapies used in the treatment of hematologic disorders. ATHN Transcends is open at treatment centers across the country—and it’s growing.
  • SOC 2 Type II Compliance
    At ATHN, we know the importance of data security and privacy—for us and for our ATHN Affiliates and other partners. We’re proud to receive SOC 2 Type II compliance in all five trust principles: security, availability, processing integrity, confidentiality, and privacy.

National Projects

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  • Healthy People 2030 Champion
    ATHN is proud to have been recognized as a Healthy People 2030 Champion by the Office of Disease Prevention and Health Promotion. This distinction is awarded to organizations that have demonstrated interest and commitment to disease prevention and health promotion, as well as being aligned with the HP2030 program vision of “a society in which all people can achieve their full potential for health and well-being across the lifespan.”
  • 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 build data management capacity and enrich the ATHNdataset.
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  • 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 rare disorders community. We’re working to establish a Health Equity Program, expand ATHN’s focus on sickle cell disease, and more.

Upcoming Events

13-16
JUN, 2024
29th Congress of the European Hematology Association (EHA) 2024
Madrid, Spain
22-26
JUN, 2024
ISTH 2024
Bangkok, Thailand
22-23
OCT, 2024
ATHN Data Summit 2024
Atlanta, GA

Featured Publications

Observational cohort study of long-term outcomes of liver transplantation in haemophilia published in Haemophilia, December 2023. Read the article
Risk of Intracranial Hemorrhage in Persons with Hemophilia A in the United States: Real-World Retrospective Cohort Study Using the ATHNdataset published in the Journal of Blood Medicine, April 2024. Read the article
Gene Therapy with Etranacogene Dezaparvovec for Hemophilia B published in the New England Journal of Medicine, February 2023. Read the article