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Universal Data Collection System


The Universal Data Collection System (UDC) collects data from people with hemophilia and other bleeding disorders of all ages to better understand issues across the lifespan. The data collected are used to find out how many people with bleeding disorders have complications and how severely they are affected, to study how different treatments affect patient health, to monitor the safety of blood products used to control bleeding, to assess quality of life, and to determine health issues that need more research.

Centers for Disease Control and Prevention, National Center on Birth Defects and Developmental Disabilities
Data Years Available: 
Mode of Collection: 
Selected Content: 
Data collected include diagnosis, bleeding history, use of treatment products, ability to attend school or work, overall activity level, joint range of motion, and quality-of-life information. Blood samples are taken to check iron level and check for viruses.
Population Covered: 

Persons with bleeding disorders can voluntarily have their data included in the UDC. Hemophilia Treatment Centers (HTCs) transmit the data and blood samples to CDC for processing.

Response Rates and Sample Size: 

Since the system began in 1998, about 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 participate.

Interpretation Issues: