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Lupus Registries and Longitudinal Studies

Overview

CDC previously funded five population-based registries designed to study established, US-based, populations diagnosed with systemic lupus erythematosus (SLE) or discoid lupus (skin lupus). CDC currently funds three longitudinal studies designed to follow people with lupus from three of the original registries.

 

History

Starting in 2004, the CDC funded a network of national lupus registries in selected counties of California, Georgia, Michigan, and New York, and at selected Indian Health Service Regions. Each site focused on one to two specific races/ethnic groups.

The Michigan and Georgia sites were the first of these registries and served as prototypes for the development of the later registries in this network. These CDC lupus registries were a unique and groundbreaking resource.

Publications that are the result of the registry research are available on the Lupus publications page.

 

Currently Funded Registries

The specific purpose of this current research is to

  • Follow the treatment history, health care access, and natural history (i.e., severity, morbidity, mortality, etc.) of cohort members.
  • Support state-of-the-art clinical, patient-reported, and biospecimen lupus repositories.
  • 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 in California and nationally.

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California Lupus Surveillance Project

(University of California, San Francisco) 

Project Director

Dr. Maria Dall’Era, CLSP Project Manager
Health Program Specialist, Chronic Disease Surveillance and Epidemiology Section
Chronic Disease Surveillance and Research Branch
California Department of Public Health
916-779-2680 (phone)
916-779-0264 (fax)
Valerie.Shipman@cdph.ca.gov

 

Georgia: The Georgians Organized Against Lupus (GOAL) Cohort: Advancing Health Disparities

(Emory University)

Principal Investigator

S. Sam Lim, MD
Assistant Professor of Medicine
Division of Rheumatology
Emory University
404-616-3642 (work phone)
404-686-5500 id# 16493 (phone)
404-688-6024 (fax)
sslim@LearnLink.Emory.Edu

 

Michigan Lupus Epidemiology and Surveillance (MILES) Program

(University of Michigan) 

Principal Investigator

Emily C. Somers, PhD ScM
Assistant Professor of Medicine and Environmental Health
Division of Rheumatology
University of Michigan
734-936-5561 (phone)
734-232-1913 (fax)
emsomers@umich.edu

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Previously Funded Registries

 

Of the following five previously funded registries, four (Georgia, Michigan, California, and New York) used similar research methods and were based in specific counties. The Indian Health Service (IHS) Lupus Registry Project was modeled after these other registries, but used both electronic and paper IHS medical records in portions of different IHS Regions.

 

California Lupus Surveillance Project 

(California Department of Public Health) 

The specific purpose of this retrospective descriptive study was to identify all cases of lupus among residents of San Francisco County and develop credible estimates of incidence and prevalence, especially among Hispanics and Asians. The work was done in collaboration with UCSF.

Contact 

Dr. Maria Dall’Era or Dr. Kurt Snipes
Chronic Disease Surveillance and Epidemiology Section
Chronic Disease Surveillance and Research Branch
California Department of Public Health
916-779-2680 (phone)
916-779-0264 (fax)
Kurt.Snipes@cdph.ca.gov

 

The Georgia Lupus Registry 

(Georgia Department of Public Health) 

The specific purpose of this retrospective descriptive study was to identify all cases of lupus among residents of DeKalb and Fulton Counties and develop credible estimates of incidence and prevalence, especially among blacks and whites. This work was done in collaboration with Emory University.

Principal Investigator

S. Sam Lim, MD
Assistant Professor of Medicine
Division of Rheumatology
Emory University
404-616-3642 (work phone)
404-686-5500 id# 16493 (phone)
404-688-6024 (fax)
sslim@LearnLink.Emory.Edu

 

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Michigan Lupus Epidemiology and Surveillance (MILES) Program

(Michigan Department of Community Health) 

The specific purpose of this retrospective descriptive study was to identify all cases of lupus among residents of Wayne and Washtenaw Counties and develop credible estimates of incidence and prevalence, especially among blacks and whites. This work was done in collaboration with the University of Michigan.

Principal Investigator

Emily C. Somers, PhD ScM
Assistant Professor of Medicine and Environmental Health
Division of Rheumatology
University of Michigan
734-936-5561 (phone)
734-232-1913 (fax)
emsomers@umich.edu

 

Manhattan Lupus Surveillance Project 

(New York City Department of Health and Mental Hygiene)

The specific purpose of this retrospective descriptive study was to identify all cases of lupus among residents of Manhattan County and develop credible estimates of incidence and prevalence, especially among Hispanics and Asians. This work was done in collaboration with New York University.

Co-Principal Investigators

Hilary Parton
Bureau of Epidemiology Services
NYC Department of Health and Mental Hygiene
347-396-4053 (phone)
347-396-4136 (fax)
hparton@health.nyc.gov

Peter Izmirly, MD
Assistant Professor of Medicine
NYU School of Medicine
212-263-5802 (phone)
212-263-0759 (fax)
Peter.izmirly@nyumc.org

 

Indian Health Service Lupus Registry Project 

The Indian Health Service (IHS) population-based registry was developed as a public health surveillance project in partnership with CDC. The objective of this study was to determine the prevalence and incidence of SLE in IHS patients in three US regions.

Principal Investigator

Elizabeth D. Ferucci, MD, MPH
IHS Lupus Project
Medical Researcher / Rheumatologist
Alaska Native Tribal Health Consortium
907-729-4591 (phone)
907-729-1570 (fax)
EDFerucci@anthc.org

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