From 2005-2009, federally funded Hemophilia Treatment Centers (HTCs) participated in the CDC’s Universal Data Collection (UDC) to help collect vital health information from about 27,000 patients in the bleeding disorders community.
Report Highlights from the UDC Report
This surveillance report focuses on UDC data collected during years 2005 through 2009. A total of 44,239 visits were made during the five-year interval. Of these, 8,816 were new enrollments and the rest were follow-up visits. People receiving care at HTCs were encouraged to participate in UDC at each visit. When a person was approached to participate in UDC but declined, a record was made. Given the nature of these records it was not possible to make an exact estimation of the refusal rate; however, the maximum and minimum refusal rates are estimated to be 25.3% and 6.3% respectively.