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The 130th Annual Meeting of APHA |
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The 130th Annual Meeting of APHA |
Judith R Baker, MHSA, Region IX Hemophilia Program, Childrens Hospital Los Angeles, 4650 Sunset Blvd., Box 54, Los Angeles, CA 90027, 323 669 4560, jbaker@chla.usc.edu
Problem: Hemophilia is a rare inherited bleeding disorder which, if untreated, results in internal bleeding that can cause chronic pain, joint damage, and premature death. Before 1990, hemophilia medication transmitted HIV and hepatitis. CDC data demonstrates a 60% reduced mortality and a 50% reduced hospitalization rate among males with hemophilia who obtain their care at a federally supported Hemophilia Treatment Center (HTC). To monitor hemophilia related blood safety and joint damage, the CDC created a prospective nationwide surveillance system, the Universal Data Collection Program (UDC), available at HTCs. Purpose: To review the first three years of UDC data from Region IX (California, Hawaii, Nevada and Guam). Method: Since July 1998, HTC staff annually asked persons over age two years to voluntarily participate, using standard informed consent procedures. Data was collected on joint damage, functioning, and a blood sample was taken to monitor for new HIV and hepatitis infections. Findings: 1012 (40% of eligible persons) enrolled in the first three years. 60% have severe hemophilia, 16% moderate, and 24% mild. Data will be presented, by severity, on self infusion, joint damage, use of assistive devices during bleeding episodes, days missed from work/school due to upper/lower extremity joint problems, activity restrictions due to joint damage, and secondary infections with hepatitis and HIV. Conclusion: The UDC provides new nationwide prospective data on persons with hemophilia which monitors the progression of joint damage and new blood borne infections. These data will be used to create prevention interventions to reduce morbidity.
Learning Objectives: At the conclusion of the session, the participant will be able to
Keywords: Disability Studies, Surveillance
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: US Maternal and Child Health Bureau and CDC
I have a significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.
Relationship: Employed by grants provided by Maternal and Child Health Bureau and CDC