Report on the Universal Data Collection Program (UDC). Includes Data Collected from May 1998 through September 2001. Volume 4, No. 1

摘要

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, a Congressional mandate was issued to CDC, with the goal of 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 is two-fold: (1) to establish a sensitive blood safety monitoring system among persons with bleeding disorders; and (2) to collect a uniform set of clinical outcomes information that could be used to monitor the occurrence of and potential risk factors for infectious diseases and joint complications. The purpose of this surveillance report is to disseminate the information being collected by this project to public health workers, health educators and planners, other care providers, and patients in the bleeding disorders community. The report contains information about the demographic characteristics of the participants, their blood and factor product use, and the occurrence and treatment of joint and infectious diseases.