ATHN Achieves Key Milestones In Year-One
Welcome to this inaugural issue of the ATHN report, your source for the most up-to-date news and information about ATHN’s efforts to advance and improve the care of individuals affected by bleeding and thrombotic disorders. Each issue of the ATHN report will report on ATHN’s progress towards its strategic goals and how its affiliates and the patients they serve participate in and benefit from ATHN’s efforts to ensure higher quality, more accessible data for the hemostasis and thrombosis community.
The launch of this newsletter marks a year of progress during which ATHN has established itself as a leader in the hemostasis and thrombosis community dedicated to the creation of a secure, national database to support clinical outcomes analysis, research, advocacy and public health reporting in the hemostasis and thrombosis community. In our first year of operation, ATHN has achieved key milestones towards its goal, including, among others,
- launching the Affiliate Program which brings together HTCs from around the country to focus on a shared vision;
- developing the means to protect patient confidentiality while enabling access to data for meaningful purposes;
- surveying HTCs about data manager issues to help us understand your data management needs and how we can best support your data collection efforts;
- creating the Community Liaison Group, a collaborative group made up of representatives from government agencies, patient organizations and other non-profit entities in the community; and
- initiating a US and international presence through involvement in meetings of NHF, HFA, the European Network on Rare Bleeding Disorders (EN-RBD) and the European Association for Haemophilia and Allied Disorders (EAHAD).
We want to take this opportunity to thank Novo Nordisk, Inc. and CDC for their generous and continuing support of ATHN’s vision, mission and values. The founding and sustaining capital provided through the unrestricted grant from Novo Nordisk and ongoing collaboration with the CDC Division of Blood Disorders helped make ATHN’s first year milestones a reality and will enable ATHN to focus on its strategic directions going forward.
