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

  • The ATHNdataset is now the largest blood disorders, real-world dataset in the United States!
  • ATHN Data Quality Counts logo ATHN Data Quality Counts
    Through this competitive award, ATHN supports researchers working to strengthen data management capacity and enrich the ATHNdataset—advancing more complete, accurate data to support patient care and research. ATHN Data Quality Counts Grant funding is supported by Hemophilia Alliance, The Alliance Pharmacy, and Indiana Hemophilia & Thrombosis Center.

News

ATHN Celebrating 20 Years of Data Innovation
  • 20 Years of Data Innovation
    In 2026, ATHN is celebrating 20 years of progress, powered by data and driven by purpose. Since we began in 2006, we’ve worked with our ATHN Affiliates and other collaborating partners to secure data, advance knowledge, and transform care for those affected by blood disorders—and together we’ve made a real impact. Our year-long 20th anniversary celebration will culminate at ATHN Data Summit 2026 in New Orleans, October 21-22, 2026—and we invite you to join us.
  • 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

13-15
AUG, 2026
NBDF Bleeding Disorders Conference
Orlando, FL
21-22
OCT, 2026
ATHN Data Summit 2026
New Orleans, LA
12-15
DEC, 2026
American Society of Hematology Annual Meeting
New Orleans, LA

Featured Publications

ATHN 16: Consistent Safety Observed Across Extensive Real-World Treatment of Bleeding Events with Eptacog Beta With and Without Prophylaxis in Hemophilia with Inhibitors presented at the ISTH 2026 Congress, July 2026. Read the poster
Routine Prophylaxis with Recombinant von Willebrand Factor in People with Clinically Severe von Willebrand Disease in a Real-World Setting: Final Analysis of ATHN 9, a Natural History Study for People with Severe von Willebrand Disease presented at the ISTH 2026 Congress, July 2026. Read the poster
Substantial Bleeding Burden and Limited Prophylaxis Use in Glanzmann Thrombasthenia: Prospective Real-World Data from ATHN Transcends presented at the ISTH 2026 Congress, July 2026. Read the poster
Evolution of Treatment Patterns in Moderate Hemophilia During Early Childhood: A Longitudinal Within-Patient Analysis presented at the ISTH 2026 Congress, July 2026. Read the poster