Why Isn't The CDC Doing This Itself?

ATHN, working with the CDC to secure and develop infrastructure resources, offers the greatest degree of protection and security for individual patient and center data with the maximum amount of flexibility.  As a federal agency, the CDC is limited in the services that it can legally provide.  The CDC cannot solicit private donations (raise funds) for research or other activities in the same way or as effectively as a private, community based organization like ATHN can.  However, the CDC has generously offered to provide the bleeding disorders community with access to state-of- the-art security and data protection by hosting the software which will allow ATHN Affiliates to pool their non-identifiable patient data to create a robust data source for research and other data needs of the bleeding disorders community at a fraction of the cost of private data hosting services.   To ensure that the CDC has no access to the data, there are strict limitations on physical access to the server and the database.  More importantly, however, the data that is stored at CDC will be encrypted using a code maintained separately by Ground Zero.  No ATHN Affiliate or individual patient protected health information data except defined data sets for which consent has been obtained will be accessible in any usable form by anyone except individual ATHN Affiliates.