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News & Press: General News

Innovative Data Collection: The Lupus Registries

Monday, June 19, 2017   (0 Comments)

CDC began funding five population-based registries in 2004 to obtain more accurate estimates of incidence and prevalence for systemic lupus erythematosus (SLE), a chronic autoimmune disease. Academic investigators partnered with their respective health departments on the following registries:

• California registry: University of California, at San Francisco investigators targeted San Francisco County 
• Georgia registry: Emory University targeted DeKalb and Fulton counties 
• Michigan registry: University of Michigan targeted Wayne and Washtenaw counties 
• New York registry: New York University targeted the New York City borough of Manhattan 
• Indian Health Services: an Alaska Native Tribal Health Consortium investigator targeted the Indian Health Service

Today, registries in California, Georgia, and Michigan, are continuing investigations in research cohorts to achieve the following objectives: 

• Better evaluate the natural history of lupus 
• Support collection of clinical information, patient-reported outcomes, and biospecimens 
• Perform high-impact research investigations to advance understanding of racial, ethnic, and socioeconomic disparities in lupus
• Support collaborative use of the repositories’ data for research investigations nationally

Important population-based findings from this lupus research include confirmation that lupus incidence rates are almost three times higher in black women than white women, and even higher in 30- to 59-year-olds.

Black patients also experience much higher rates of end-stage renal disease, an adverse outcome of SLE. Young black women who have kidney disease caused by lupus (lupus nephritis) tend to have a more severe disease course and are more likely to progress to end stage renal disease. Non-white patients are more likely to suffer from lupus-related depression, cardiovascular disease, and diabetes and have worse health-related quality of life than white patients.

These results are crucial to understanding the populations most at risk for lupus, for helping health care providers understand their patients at risk, and for promoting early diagnosis and treatment of lupus. 


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