Information for Healthcare Providers
One of the major challenges facing researchers and scientists who work on rare disorders, such as hemophilia, is lack of access to uniform health data. To address this issue and advance health research, CDC supports and coordinates a national public health surveillance project, the Universal Data Collection (UDC) system. UDC is conducted through a national network of specialized hemophilia treatment centers.Through UDC a consistent set of health-monitoring data is collected from people with hemophilia and other bleeding disorders at hemophilia treatment centers.
View and print national and regional data on patients enrolled in the UDC program.
CDC supports a network of hemophilia treatment centers (HTCs) to provide comprehensive health management and prevention services. The centers use multi-disciplinary teams of health care specialists, state-of-the art clinical research programs, and outreach and education programs.
Use the directory to search for the names and contact information of hemophilia treatment centers and staff, create lists, print mailing labels, and send emails. Healthcare providers might use this directory to find and consult with other experts in the field.
CDC is conducting the largest survey to date of people with hemophilia in the United States to identify the mutation ―or change in the gene that causes their hemophilia. During this study, CDC has also gathered a list of all of the mutations reported to cause hemophilia worldwide. More than 2,000 mutations have been reported for hemophilia A. The CHAMP project will store this and other lists in databases that will be available for researchers and health care providers to keep them informed on mutations that have been identified and how each mutation has affected the people reported to have it.
Learn how to accurately measure and collect joint range of motion for the Universal Data Collection (UDC) program. This video is intended for physical therapists or other health care providers at hemophilia treatment centers to use when they are collecting range of motion measurements.
The National Hemophilia Foundation formed a medical advisory council to advance clinical care and promote hemophilia research. This body establishes quality of care guidelines for the treatment of hemophilia and other bleeding disorders.
HANDI (Hemophilia and AIDS/HIV Network for the Dissemination of Information) is a specialized health-based library and helpline service providing information and referrals about bleeding and clotting disorders. In addition to information on the unique medical issues faced by people with hemophilia and AIDS/HIV, HANDI addresses secondary conditions such as hepatitis C and joint disease as well as rare factor deficiencies and thrombophilia. CDC supports and funds HANDI through the National Hemophilia Foundation.
Hemophilia Emergency Care provides guidelines and recommendations for medical personnel initiating treatment in the emergency department.
Find data and statistics related to hemophilia.
Find a summary of CDC research on hemophilia.
Read CDC’s latest scientific articles on hemophilia.