9/15/2011: Closing of the Universal Data Collection Study

The Universal Data Collection (UDC) system was created because people with bleeding disorders demonstrated to Congress the need for additional information to improve care for those affected. This study has been carried out with the help of federally funded hemophilia treatment centers (HTCs) in the United States. The data collected by the UDC are used to investigate the complications of bleeding disorders, observe how different treatments affect health and quality of life, monitor the safety of blood products and determine other factors that require future research. On September 29, 2011, the UDC trial will be closing patient enrollment. The CDC has decided to stop data collection for the UDC study because funding has been decreased. Since the system began in 1998, around 24,000 people with bleeding disorders have contributed their health data by participating in the UDC program. More than 80% of all people with hemophilia who receive care at HTCs have participated.

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