New report released on CDC's Universal Data Collection program

The CDC established a national public health surveillance project called the Universal Data Collection (UDC) system, which was carried out by the CDC and federally funded hemophilia treatment centers (HTCs) from 1998 through 2011.

Over the course of the project, about 27,000 people with bleeding disorders contributed their health data by participating in the UDC program. It is estimated that more than 80% of people with hemophilia who received care at HTCs during this time participated. Data were collected from participants repeatedly over the years so they could be followed for the development of certain outcomes.

Surveillance reports were created to disseminate the information collected through the UDC program to care providers, public health workers, community advocates, health educators and planners, patients in the bleeding disorders community and others. The reports contain information about the demographics of the participants, their blood and factor product use, and the occurrence and treatment of joint and infectious diseases.

The most recent report to be released, the Report on the Universal Data Collection Program January 2014 focuses on UDC data collected during years 2005 through 2009.  A total of 44,239 visits were made during the five-year interval, 8,816 of which were new enrollments and 35,423 of which were follow-up visits.

UDC data and reports are available to HTC staff, who can download electronic files and HTC-specific reports containing UDC data collected from participants at their HTC. In addition, cumulative national and regional reports are available to the public on CDC’s website.

In addition to this most recent report, the following reports are archived on the CDC's website:

  • Report on the Universal Data Collection Program July 2005 
  • Report on the Universal Data Collection Program (Special report on children under two years of age in UDC) July 2006 
  • Report on the Universal Data Collection Program (Special report summarizing data on females with von Willebrand disease) December 2003