Overview of Sickle Cell Disease Activities at the Centers for Disease Control and Prevention

Abstract

The Centers for Disease Control and Prevention’s research and programmatic activities for sickle cell disease are focused on four main areas: Public Health Surveillance, Epidemiological and Laboratory Research, Prevention, Education, and Awareness, and Global Technical Assistance. With respect to public health surveillance, CDC in collaboration with the National Institutes of Health and seven state health departments (GA, NC, CA, MI, PA, NY and FL) is in the second year of a pilot project to develop the first ever public health surveillance system to assess the burden and monitor the health of persons with hemoglobinopathies including sickle cell disease and thalassemia. Also in the area of public health surveillance, in 2011, CDC in also embarking on a pilot expansion of a blood safety monitoring program to assess the adverse health outcomes of person with blood disorders including sickle cell disease who are therapeutically transfused. With respect to epidemiological and laboratory research CDC researchers lead and/or collaborate with other investigators examining the a host of outcomes among the sickle cell disease population including maternal and child health outcomes, asthma, mortality, acute chest syndrome and others. Additionally CDC is stimulating awareness, collaboration and education through sponsorship of events, scientific meetings, webinars, and workgroups. Finally, CDC is providing technical assistance to several international partners to assist those partners with developing laboratory capacity for the establishment of newborn screening and developing data collection and surveillance systems to monitor and evaluate the impact of public health and health programs for sickle cell disease in those countries.