ATHN: The Organization

Within the bleeding and clotting community, ATHN is, in many ways, a first.  However, collaboratives in other clinical areas have been successful and can serve as a model for development.  For example, the Children’s Oncology Group is a collaborative focused on children’s oncology issues.   The group registers children and adolescents through member institutions with the goal of having clinical information about every child diagnosed with cancer in the U.S. and Canada.   Similarly, the Cystic Fibrosis Foundation built upon its network of accredited care centers to create a research network.

Within the bleeding and clotting community, ATHN is, in many ways, a first.  However, collaboratives in other clinical areas have been successful and can serve as a model for development.  For example, the Children’s Oncology Group is a research collaborative focused on children’s oncology issues.   The group registers children and adolescents through member institutions with the goal of having clinical information about every child diagnosed with cancer in the U.S.

ATHN is a non-profit organization represented by a diverse board of directors.  We pursue our mission only through the willing participation of groups and individuals from across the bleeding and clotting disorders community.   While ATHN does not have a written specific “transparency policy” at this time, the board is committed to the highest ethical standards.  It has adopted a policy on disclosure of potential conflicts of interest.  And, it communicates its intent broadly as evidenced by the past and planned media relations and presentations at HFA, NHF and HTC regional meetings.

The ATHN Board of Directors is comprised of a prestigious and broad based group of healthcare professionals and other leaders. The present ATHN Board of Directors reflects the broader hemostasis and thrombosis community with representation of consumers, providers and HTC regions. Seven of its 17 members are physicians providing care as pediatric or adult hematologists. Included are the immediate past president and a current board member of the Hemostasis and Thrombosis Research Society (HTRS), as well as a former chair of the National Hemophilia Foundation’s Medical and Scientific Advisory Council (MASAC), the professional body that recommends standards of care. Other ATHN board directors are drawn from different regions of the country to bring insight and expertise from clinical nursing, social services, law, and the management of treatment centers. A consumer member and the ATHN CEO complete the voting membership.

ATHN will be gathering information about patients with a wide range of bleeding and blood clotting disorders. (Some common examples are listed below.)

ATHN was formed in response to nationally identified needs delineated over the course of two years by representatives of the hemophilia provider and patient communities that included the following:

ATHN’s mission is to 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 in the hemostasis and thrombosis community.

ATHN will foster collaboration with patients, providers, suppliers, government agencies and non-profit organizations in the thrombosis and hemostasis community. The organization’s core values are: