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Report on the Universal Data Collection Program : includes data collected from January 2005 through December 2009
  • Published Date:
    January 2014
  • Language:
    English
Filetype[PDF - 635.56 KB]


Details:
  • Corporate Authors:
    National Center on Birth Defects and Developmental Disabilities (Centers for Disease Control and Prevention). Division of Blood Disorders.
  • Document Type:
  • Description:
    In 1975, Congress initiated federal funding to specialized hemophilia treatment centers (HTCs) to provide comprehensive care to people with bleeding disorders. In 1983, the Centers for Disease Control and Prevention (CDC) developed programs for people with hemophilia that began with risk-reduction efforts aimed at preventing secondary infection of family members with HIV.

    In 1991, CDC received a request from the National Hemophilia Foundation to expand their collaborative activities within the bleeding disorders community. Meetings with patients and hemophilia care providers were held during 1992 to determine the areas of highest priority. Based on recommendations from these constituents, Congress requested that CDC develop programs focused on reducing the human suffering and financial burden of bleeding disorders by focusing national emphasis on prevention and early intervention. The issues of greatest concern identified by the bleeding disorders community were: (1) the safety of the blood supply from infectious diseases and (2) the prevention of joint disease.

    In response, CDC developed the Universal Data Collection Program (UDC). The purpose of UDC was two-fold: (1) to establish a sensitive blood safety monitoring system among people with bleeding disorders and (2) to collect a uniform set of clinical outcomes information that can be used to monitor the occurrence of and potential risk factors for infectious diseases and joint complications.

    The UDC surveillance project was active from 1998 through September 2011. People with bleeding disorders were enrolled in UDC by care providers in each of the nation’s approximately 140 federally funded HTCs. A uniform set of clinical data and blood specimens (plasma or serum) were collected by HTC staff each year during each participant’s annual comprehensive clinic visit. A portion of each specimen was used to perform free screening tests for hepatitis A, B, and C viruses and for HIV. The remainder of the specimen was stored for use as needed in future blood safety investigations.

    Suggested citation: Centers for Disease Control and Prevention. Report on the Universal Data Collection Program, 2005-2009, January 2014:1-26.

  • Supporting Files:
    No Additional Files