Lupus Research Studies
Overview
CDC currently funds five longitudinal studies designed to follow people with lupus. CDC previously funded five population-based registries to study US populations diagnosed with systemic lupus erythematosus (SLE) or discoid lupus (skin lupus). Of the five current studies, three are from the original registries (California, Georgia, and New York) and two new sites (Mayo Clinic and the University of Utah).
History
Starting in 2004, CDC funded a network of national lupus registries in selected counties of California, Georgia, Michigan, and New York, and at selected Indian Health Service (IHS) regions. Each site focused on one to two specific races or ethnic groups.
The Georgia and Michigan sites were the first of these registries and served as models for the development of later registries. 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.
Five 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, and mortality related to lupus) of patients participating in the studies.
- Support state-of-the-art clinical, patient-reported, and sample 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.
California Lupus Epidemiology Study (CLUES)
(University of California, San Francisco)
Project Director
Maria Dall’Era, M.D.
Professor of Medicine
Director, UCSF Lupus Clinic and Rheumatology Clinical Research Center
Division of Rheumatology
University of California, San Francisco
415-476-0783 (phone)
Contact
Georgians Organized Against Lupus (GOAL) Cohort: Addressing Health Disparities in Lupus through Social Determinants of Health
(Emory University)
Principal Investigator
S. Sam Lim, MD
Professor of Medicine and Epidemiology
Division of Rheumatology
Emory University
404-616-3642 (work phone)
404-686-5500 id# 16493 (phone)
404-688-6024 (fax)
Contact
Principle Investigator
Cristina Drenkard, MD, PhD
Associate Professor of Medicine
Assistant Professor of Epidemiology
Emory University
404-616-7430 (work phone)
Contact
HEALTH: Harnessing Epidemiology to Advance Lupus Treatment and Health
(New York University)
Principal Investigator
Peter Izmirly, MD, MSc
Associate Professor of Medicine
Division of Rheumatology
NYU School of Medicine
212-263-5802 (phone)
646-501-5208 (fax)
contact
Principal Investigator
Heather T Gold, PhD
Professor
Department of Population Health
NYU School of Medicine
212-263-4253 (phone)
contact
Principal Investigator
Jill Buyon, MD
Professor of Medicine
Director, Division of Rheumatology
NYU School of Medicine
212-263-0743 (phone)
646-501-0577 (fax)
contact
Improving Pediatric Lupus Care and Outcomes through the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Lupus Registry
(University of Utah)
Co-Primary Investigators
Aimee O. Hersh MD, MS
Associate Professor, Division Chief
Pediatric Rheumatology, University of Utah
81 Mario Capecchi Drive Salt Lake City, UT 84113
801-213-4095 (Phone)
801-587-7539 (Fax)
Contact
Mary Beth F. Son, MD
Section Chief, Rheumatology | Division of Immunology | Boston Children’s Hospital
Chair in Rheumatology| Boston Children’s Hospital
Associate Professor of Pediatrics | Harvard Medical School
300 Longwood Avenue, Boston MA 02115
617-919-6083 (Phone)
617-730-0249 (Fax)
contact
Lupus Midwest Network (LUMEN)
(Mayo Clinic)
Program Directors
Cynthia S. Crowson, PhD
Associate Professor of Medicine and Biostatistics
Health Sciences Research, Biomedical Stats & Informatics
Mayo Clinic
507-284-5594 (phone)
Contact
Ali Duarte-Garcia, MD MSc
Assistant Professor of Medicine
Division of Rheumatology
Mayo Clinic
507-284-5800 (phone)
507-284-0564 (fax)
Contact