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Universal Data Collection
 
What is the UDC?
UDC is a national program conducted by federally funded hemophilia treatment centers with support from the Centers for Disease Control and Prevention (CDC) to monitor the health of people with bleeding disorders. Health information, range of motion measurements, and a blood sample are obtained from persons who choose to participate.

What is the purpose of UDC?
To monitor two major health complications of bleeding disorders:
• Blood-borne diseases
• Joint disease

What are the benefits of participating in UDC?
• Blood samples stored at CDC as part of UDC will allow rapid investigation of any new infectious agents potentially spread through blood products;

•In the first year of participation, patients are tested for hepatitis A, B, C, and HIV and results are provided to the participant's doctor. Then, each participant is retested every year for viruses for which he/she previously tests negative to determine that no new infection has occurred;

•Collecting the same information from as many persons with bleeding disorders in the United States as possible will provide the best information to determine why some people with bleeding disorders develop problems or complications and others do not;

• Monitoring joint disease will help researchers identify patterns and develop new approaches to help prevent or reduce joint disease;

• Participants will have the personal satisfaction of knowing that they and their health care providers are working together to find solutions to prevent the complications of bleeding disorders for current and future generations.

Who can participate in UDC?
Any person who has an inherited bleeding disorder (including hemophilia, von Willebrand disease, and other hereditary factor deficiencies) or an aquired inhibitor.

Is the program confidential?
Yes! An identification number will be placed on the blood sample and UDC forms so that a patient's name is never revealed to anyone outside the treatment center.

How do I enroll in UDC?
Contact your hemophilia treatment center or call the National Hemophilia Foundation's information service, HANDI, at 800-42-HANDI or info@hemophilia.org to locate the nearest center.