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The American Thrombosis and Hemostasis Network (ATHN) has received an unrestricted, five- year grant from Novo Nordisk to help establish and grow the network’s organizational leadership and operational infrastructure. Founded in July 2006 to advance and improve the care of individuals affected by bleeding and blood clotting disorders, ATHN provides stewardship of a secure national data- base that will be used to support epidemiology studies, clinical outcomes analysis, research, advocacy and public health reporting in the thrombosis and hemostasis community. In a joint effort with the Centers for Disease Control and Prevention’s Division of Blood Disorders, ATHN will create a formal coalition with the 140 federally funded hemophilia treatment centers across the US with the goal of conserving re- sources through the use of a common information infrastructure so data will not be at risk for loss or fragmentation. The organization also will facilitate the reuse of common data elements – reducing the need to collect the same data repeatedly for different purposes using different formats. At the local level, patients and providers will benefit from having access to more structured individual and aggregate patient data as needed to support the continuum of care. “We are proud to support ATHN with their innovative work that will lead to better insight into treatments for people with hemophilia,” said Martin Soeters, president of Novo Nordisk. “As part of our social responsibility, Novo Nordisk is committed to address- ing the significant need for improving hemophilia care and we are confident that the ATHN clinical database will help answer the many questions that exist about bleeding and thrombosis conditions and care.” Novo Nordisk will not receive preferential access to the database nor ATHN services, the organiza- tion emphasized. Policies and procedures for requesting access to data will be established via ATHN’s Privacy and Data Security Committee, currently in the formative stage. ATHN is coming soon to the World Wide Web at http://www.athn.org (Source: ATHN press release, 2/16/07)

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