CDC Funded Lupus Activities
CDC supports epidemiologic research on lupus (systemic lupus erythematosus or SLE), carries out research into lupus interventions, and undertakes pilot programs to inform lupus public health practice. CDC-funded research includes
- Patient registries that pull together information on SLE and discoid lupus (skin lupus).
- Longitudinal studies.
SLE Patient Registries
Patient registries are large databases that include patient information on symptoms, treatments, side effects, biomarkers, and genetic analyses. CDC previously funded five SLE patient registries to find out how common SLE is and how frequently it develops in different racial and ethnic groups. The registries were in California, Georgia, Michigan, and New York City, as well as with American Indians/Alaska Natives in Alaska, Oklahoma City, and Phoenix Indian Health Service RegionsExternal.
SLE Longitudinal Studies
A longitudinal study observes the same group of people over a long period of time (many years) to help answer particularly tough research questions. CDC funds three longitudinal studies of people with lupus to determine the how the disease progresses, available care, current treatments, factors associated with treatments, health disparities, and other outcomes. These studies follow the patients from three of the five original registries, and are being conducted by the University of Michigan, Emory University in Georgia, and University of California, San Francisco.
CDC also works with national organizations and other stakeholders to raise awareness, increase knowledge, and enhance the skills of those with lupus and their health care providers.
Raising Awareness, Increasing Knowledge and Skills About Lupus
CDC is funding key partners—the Lupus Foundation of America and the American College of Rheumatology—to raise awareness and understanding about lupus among those with the disease. These key partners are also working to increase knowledge and advance the skills of health care providers in clinical care of lupus patients. They are creating lupus coalitions to support public health activities. The partners will develop self-management education tools for people with lupus based on CDC research.
A National Public Health Agenda for LupusCdc-pdfExternal was released in late 2015 to help prioritize public health efforts to improve the care and quality of life for people living with lupus. The first of its kind, the Agenda was developed with the National Association of Chronic Disease DirectorsExternal, the Lupus Foundation of America, and other stakeholders, that include public health professionals, lupus experts, clinicians and individuals living with the disease. The Agenda outlines a broad public health approach to lupus diagnosis, disease management, treatment, and research.
Publications that are the result of CDC-funded activities are available on the lupus publications page.