How Will The Data Be Used To Benefit The Bleeding And Blood Clotting Community?

The work of ATHN will help ensure that health care decisions, at the individual as well as population level, are optimally based on complete, standardized information, as opposed to fragmented data that must be pieced together.  The ATHN infrastructure will produce the breadth and scope of standardized data needed to better understand the epidemiology, genetics and natural history of these disorders, analyze clinical outcomes of persons with bleeding and blood clotting disorders, facilitate the development of standards of care, aid in the post-marketing surveillance of FDA approved therapies, as well as support advocacy and community education.  We believe that assessing high cost, but effective, necessary and expected therapies and regimens (e.g., immune tolerance, prophylaxis, etc.) will help to preserve access to high quality care.