News & Events
The Development of One National Data Source for Bleeding and Thrombotic Disorders Gains Momentum
CDC Funding and the Launch of Collaborative Initiatives Propel ATHN
Riverwoods, ILL. -- The American Thrombosis and Hemostasis Network (ATHN), announced the award of a milestone grant from the Centers for Disease Control and Prevention (CDC) to fund a national disaster preparedness plan for the hemostasis and thrombosis community that will preserve access to comprehensive care and avoid disruption of care in case of an emergency. The announcement was made today at the National Hemophilia Foundation’s 59th Annual Meeting and Exhibit in Orlando, FL.
“Coordination and readiness are two key elements needed when an emergency arises,” said Diane Aschman, President and CEO of ATHN. “The CDC grant will enable ATHN to work with Hemophilia Treatment Centers (HTCs) to develop a plan to safeguard patient health information and to respond in a disaster, when patients are unable to get care from their regular HTC care provider. The program should also give patients the comfort and security of knowing what to do in case of a disaster to ensure that appropriate treatment can be received in a timely manner.”
ATHN is collaborating with Hemophilia Treatment Centers (HTCs), non-profit organizations and government agencies to collect core health data in a standardized electronic format and then use it to restore care to pre-disaster levels. This same data will be used to advance the science and practice of care to better understand the epidemiology, genetics, natural history and treatments of bleeding and blood clotting.
Two other collaborative ATHN initiatives also announced today; the ATHN Affiliate Program, focused on the providers of care and the Community Liaison Group, to gain input from the broader community and create the affiliations enabling one national data source.
“Each of these initiatives is central to ATHN becoming a valued community resource,” explained Aschman. “Collaboration is the cornerstone of ATHN’s values and as the steward of the one national clinical database for the hemostasis and thrombosis community, it is fundamental to our success. The programs launched today combined with the disaster preparedness grant from the CDC, further our efforts to support and improve care for this community.”
ATHN Affiliate Program
The ATHN Affiliate Program will create formal relationships with HTCs and thrombosis sites funded through the U.S. Department of Health and Human Services Health Resources and Services Administration (HRSA) Maternal and Child Health Bureau and the CDC. The centers — ATHN Affiliates — will commit to collect data for use by the community through ATHN. The CDC will provide access to state-of-the-art security and data protection by hosting the software. By pooling their non-identifiable patient data, ATHN Affiliates will create a robust data source that expands the evidence base needed to establish clinical guidelines, evaluate outcomes, contribute to fact-based advocacy and improve care. Ten percent of HTCs have signed on in the first weeks.
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Tangible benefits for ATHN Affiliates include:
- Access to data manager support, up-to-date training and technical assistance;
- Insights from the data to facilitate care improvement and research initiatives;
- An improved data collection process, easier data entry and more time for patient care;
- Leadership role by serving on the ATHN Board of Directors, a committee or project review panel and weighing in on policies pertaining to data, research, publication and Affiliate status;
- Participation without a fee for becoming an ATHN Affiliate.
Community Liaison Group
The ATHN Community Liaison Group has been designed to bring together an advisory group representing the broader hemostasis and thrombosis community to enable two-way communication between these various groups and the ATHN Board of Directors, and to facilitate continuous alignment with broader community needs. The group will focus on collaboration and work to bring together the various perspectives in the community to ensure the ATHN database will be beneficial to all. Collaborating organizations that have appointed a representative are:
- National Hemophilia Foundation (NHF) with its Medical and Scientific Advisory Committee (MASAC),
- Hemophilia Federation of America (HFA),
- National Alliance for Thrombosis and Thrombophilia (NATT) through its Medical and Scientific Advisory Board (MASAB),
- Hemophilia and Thrombosis Research Society (HTRS),
- Anti-coagulation Forum,
- World Federation of Hemophilia (WFH),
- Committee of Ten Thousand (COTT)
- HRSA Maternal and Child Health Bureau (MCHB),
- U.S. Food and Drug Administration (FDA),
- National Heart Lung and Blood Institute (NHLBI),
- Centers for Disease Control and Prevention (CDC) Division of Blood Disorders,
- CDC National Center for Public Health Informatics (NCPHI).
ATHN’s collaborative efforts to-date include a significant unrestricted five-year grant from Novo Nordisk to help establish and grow the organizational leadership and operational infrastructure of the network; and a joint effort with the Centers for Disease Control and Prevention (CDC) to develop the greatest degree of protection and security for individual patient and center data with the maximum amount of flexibility.
About ATHN
The American Thrombosis and Hemostasis Network (ATHN) is a non-profit corporation founded in July 2006. ATHN is committed to one national data source for the hemostasis and thrombosis community and dedicated to advancing and improving the care of individuals affected by bleeding and blood clotting disorders. ATHN will provide stewardship of a secure national database, adherent to all privacy guidelines, which will be used to support clinical outcomes analysis, research, advocacy, and public health reporting. Visit ATHN at http://www.athn.org. ATHN’s Emergency Preparedness Program is supported by Cooperative Agreement Number U27DD000319 from the CDC.
ATHN MEDIA CONTACT:
Kathleen Van Gorden
KVG Communications
401-480-1840
kathleenv@kvgcom.com
