THALASSEMIA DATA AND BLOOD SPECIMEN COLLECTION SYSTEM

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This subproject is one of many research subprojects utilizing the resources provided by a Center grant funded by NIH/NCRR. The subproject and investigator (PI) may have received primary funding from another NIH source, and thus could be represented in other CRISP entries. The institution listed is for the Center, which is not necessarily the institution for the investigator. Rationale: The number of persons with thalassemia major in the US is not known, but is estimated to be about 600 - 1000. Six large thalassemia treatment centers located in Boston, MA, Chicago, IL, Philadelphia, PA, New York, NY, Los Angeles and Oakland, CA provide care to about 400 people with thalassemia. In October 2002, CDC began a five year cooperative agreement with these six thalassemia treatment centers to establish a blood safety monitoring system and to assist with the analysis of a uniform set of clinical data routinely collected on these individuals. Aim I: Free testing of blood specimens collected on a regular basis from persons receiving care in these thalassemia treatment centers for the presence of blood borne pathogens will be offered by CDC to assist the treatment centers in monitoring related infections. After testing, the remainder of each serum specimen will be used by the CDC to establish a serum bank for possible future use in evaluating the safety of blood products used by these persons. Aim II: Information from this system, including demographic and epidemiologic data on the participating subjects, will be used by the Hematologic Diseases Branch of CDC to assess the safety of the blood supply and to develop and monitor the effectiveness of interventions designed to address our mandate from Congress, which is to reduce or prevent the complications of thalassemia. It is anticipated that the Thalassemia Data and Blood Specimen Collection System will continue into the foreseeable future as the CDC continues its prevention activities for this population.