Building a modern data network to advane knowledge. 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

Research

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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

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  • Healthy People 2030 Champion
    ATHN is proud to have been recognized as a Healthy People 2030 Champion by the U.S. Department of Health and Human Services’ 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 having an organizational mission that is 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 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 blood disorders community. We’re working to establish a Health Equity Program, expand ATHN’s focus on sickle cell disease, and more.

Upcoming Events

7-10
FEB, 2023
European Association for Haemophilia and Allied Disorders (EAHAD)
Manchester, England
27-29
MAR, 2023
19th Annual 340B Coalition Winter Conference
San Diego, CA
10-13
MAY, 2023
ASPHO (American Society of Pediatric Hematology Oncology)
Fort Worth, TX

Featured Publications

U.S. Cohort Study of Previously Untreated Patients with Congenital Hemophilia (ATHN 8: PUPs Study): Inhibitor Development and Treatment Characteristics oral presentation abstract published in Blood, November 2022. Read the abstract
Direct Oral Anticoagulants in Pediatric Venous Thromboembolism: Experience in Specialized Pediatric Hemostasis Centers in the United States article published in Research and Practice in Thrombosis and Haemostasis, November 2022. Read the article
Prevalence of comorbid conditions among older males with haemophilia receiving care in haemophilia treatment centers in the United States published in Haemophilia, August 2022. Read the article