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

Research

Feature1 athntranscends
  • 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 tendancies. 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.
  • My Life, Our Future Research Repository
    Announcing a call for Pre-Proposals for access to the MLOF Research Repository, the largest hemophilia scientific resource of its kind in the world. US-based investigators are invited to submit their applications to ATHN by January 15, 2021. Learn more

National Projects

MMWR Evaluation of CDC’s Hemophilia Surveillance Program — Universal Data Collection (1998–2011) and Community Counts (2011–2019), United States
  • ATHN is excited to share news from our Centers for Disease Control and Prevention (CDC) partners about a report published in the CDC Morbidity and Mortality Weekly Report (MMWR). We congratulate our CDC and HTC partners and encourage you to review the report. ATHN looks forward to supporting the CDC and HTCs over the next five years of this collaborative project.
  • 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.
  • 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.

NHPCC

Feature3 casestudy
  • New Mountain States QI Case Study
    Read the latest NHPCC case study, which follows centers from the Mountain States region that have successfully implemented transition of care QI projects.
  • Patient Experience of Care Survey
    This survey is an important tool for capturing data and reporting on transition of care planning for the Healthy People 2020 DH-5 measure. ATHN encourages all HTCs to invite their patients to participate.
  • Action Guide
    Get the Action Guide for Improving Care for People with Bleeding Disorders—a go-to resource for national quality improvement focusing on the transition from pediatric to adult care.

Upcoming Events

3-5
FEB, 2021
European Association for Haemophilia and Allied Disorders 14th Annual Congress – Virtual
28
FEB, 2021
Rare Disease Day
8-9
MAR, 2021
Hemostasis and Thrombosis Research Society (HTRS) Virtual Research Colloquium

Featured Publications

Characterizing the Use of Anticoagulants in Children Using the American Thrombosis and Hemostasis Network Dataset (ATHNdataset) published in Thrombosis Research. Download full article
A Cross-Sectional Study of Women and Girls with Congenital Bleeding Disorders: The American Thrombosis and Hemostasis Network (ATHN) Cohort is the largest cohort of women and girls with bleeding disorders to date. Download full article

Highlights