Riverwoods, IL – The American Thrombosis and Hemostasis Network (ATHN), a nonprofit organization committed to advancing and improving care for individuals with bleeding and clotting disorders, announced today that CSL Behring
is providing funding to ATHN as a Supporting Member of the ATHN Industry Consortium. This funding will help ATHN continue to strengthen and enhance its programs and provide a growing resource for bleeding and clotting disorders research and care.
ATHN and its 135 affiliated hemophilia treatment centers (HTCs) across the U.S. have developed, tested, and implemented a common Web-based infrastructure to collect standardized data across the geographically and organizationally diverse treatment center network. The ATHNdataset, a national patient health data resource was developed to improve care and support important research. To date, over 15,000 patients have opted to share their data as part of this resource. This U.S. Health Insurance Portability and Accountability Act (HIPAA)-compliant limited data set increasingly contains the breadth and scope of standardized data needed to better understand bleeding and blood clotting disorders, analyze clinical outcomes, and improve standards of care.
“At CSL Behring, we are committed to making life better, longer, and easier for people with rare and serious diseases,” said Lynne Powell, Senior Vice President, North America Commercial Operations, CSL Behring. “ATHN’s dedication to advancing scientific research and the care for people who are living with a bleeding disorder aligns with our long-standing commitment to this community and we are proud to support the organization in its mission.”
“ATHN is grateful to CSL Behring for becoming a Supporting Member of the ATHN Industry Consortium and for joining Novo Nordisk and Baxter, which committed as Visionary Members late last year,” said Barbara A. Konkle, MD, Chair, ATHN Board of Directors; Director, Clinical and Translational Research, Puget Sound Blood Center; and Professor of Medicine, University of Washington, Seattle, WA. “CSL Behring is committed to saving lives and improving the quality of life for people with rare and serious diseases and we are proud to partner with them.”
An open and transparent process will be used to request access to data in the ATHNdataset by scientists and researchers at academic institutions or companies interested in conducting scientifically sound research projects. Participants’ names and other identifying information are not available to ATHN or to researchers, and the confidentiality of all participants is strictly protected.
The American Thrombosis and Hemostasis Network (ATHN) is a nonprofit corporation founded in July 2006. ATHN is dedicated to advancing and improving the care of individuals affected by bleeding and blood clotting disorders. ATHN provides stewardship of a secure national database, adherent to all privacy guidelines, used to support clinical outcomes analysis, research, advocacy, and public health reporting in the hemostasis and thrombosis community. To learn more, visit http://www.athn.org.