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

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  • ATHN Transcends
    ATHN Transcends is a natural history cohort study of non-neoplastic hematologic disorders, launching summer of 2020. ATHN Transcends provides clinical researchers in the blood disorders field with a uniform, secure, unbiased, and enduring method to collect long-term safety and efficacy data to increase knowledge about the blood disorders population.
  • ATHN Transcends: Hemophilia Natural History Arm
    This longitudinal, observational cohort arm aims to determine the safety, effectiveness, and practice of therapy for participants with hemophilia with or without inhibitors.
  • ATHN Transcends: PUPs Arm
    The PUPs Arm is a national cohort of previously untreated patients (PUPs) with congenital hemophilia.

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

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  • New Quality Improvement Case Study
    Learn about how the ATHN-affiliated HTC Western New York BloodCare is engaging patients and families to improve the transition from pediatric to adult care.
  • 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

24-25
SEP, 2020
Foundation for Women & Girls with Blood Disorders, 2020 Virtual Conference
2-4,
9-11
OCT, 2020
The Coalition for Hemophilia B 2020 Annual Symposium, a Virtual Event
14-16
OCT, 2020
ATHN Data Summit 2020, a Virtual Event

Featured Publications

“Population-based surveillance of haemophilia and patient outcomes in Indiana using multiple data sources” published in the journal Haemophilia. Download full article
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Transition of Care for Patients with Venous Thromboembolism (VTE) published in the journal Thrombosis Research. Download full article
NHPCC
Impact of the 340B Pharmacy Program on Services and Supports for Persons Served by Hemophilia Treatment Centers in the United States published in the Maternal and Child Health Journal. Download full article

Highlights