Community Counts: CDC Public Health Surveillance Project For Bleeding Disorders
The Community Counts project is gathering data to learn more about patients with bleeding and clotting disorders at hemophilia treatment centers (HTCs) nationwide. The goal is to increase knowledge of inhibitors and other complications, reduce and prevent them from happening, and ultimately improve the quality of life of people with bleeding disorders.
Led by ATHN in partnership with the U.S. Hemophilia Treatment Center Network and the Centers for Disease Control and Prevention (CDC), Community Counts is happening at over 135 HTCs nationwide and at the end of 2015, includes over 53,000 patients.
Community Counts is made up of 3 parts:
- HTC Population Profile is taking a head count of the bleeding and clotting disorders population and asking questions to learn more about the patients receiving care within the HTC network.
- Registry for Bleeding Disorders Surveillance is collecting detailed clinical information to monitor trends, identify risk factors and rates of complications, and identify high-risk populations for prevention programs.
- Mortality Reporting is gathering information about causes of death of patients who received care at HTCs and have died since September 30, 2011.
Demographic data from HTC visits through 12/31/15 on over 53,000 unique individuals has been collected utilizing ATHN Clinical Manager and ATHN Study Manager. Detailed registry data are also included on individuals with hemophilia or related bleeding disorders. As part of Community Counts, blood specimens from individuals participating in the Registry for Bleeding Disorders Surveillance are tested in a central laboratory to learn more about inhibitors and infectious diseases like hepatitis C and HIV.
The Registry data, together with the specimen testing results, will allow the tracking of trends in inhibitor development and monitor other outcomes such as adoption of prophylaxis, rates of joint bleeding, joint and other surgeries, adoption of new products, morbidities in women with bleeding disorders, and many other outcomes.
Be a part of the progress.
Community Counts is open to all patients with hemophilia A and B, von Willebrand disease, rare bleeding disorders, platelet disorders, and some clotting disorders who are receiving care at federally funded HTCs. The data is secure and confidential under the HIPAA Privacy Rule. At some HTCs, you may be asked to sign an authorization or consent.
To participate in Community Counts, simply talk to your HTC staff.
If you are a researcher interested in using the Community Counts data for a project, please email firstname.lastname@example.org.
Community Counts is funded under CDC grant #DD001155.