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Lupus Registries

Project Description

Understanding the true magnitude and impact of systemic lupus and other connective tissue diseases is difficult because existing estimates vary widely. This project develops population-based registries to better define the incidence and prevalence of lupus (both systemic lupus erythematosus discoid lupus) and better characterize individuals with these conditions. These registries might serve as a model for other low prevalence conditions of public health interest, and could also serve as a platform for following the natural history of lupus and for studying other connective tissue diseases. This fits with the CDC Arthritis Program plan to implement the National Arthritis Action Plan—A Public Health Strategy, one specific strategy of which is to better define the burden of specific types of rheumatic conditions.

Project Objectives

  • Determine how many cases of lupus exist.
  • Determine how many new cases occur each year.

Existing registries in Georgia and Michigan (see below) are focused on developing estimates for the Caucasian and African American populations.

  • Lim SS, Drenkard C, Helmick CG, Gordon C, DeGuire P, Bayakly R, McCune WJ, Somers EC. Population-Based Lupus Registries: Advancing Our Epidemiologic Understanding. Arthritis Care & Research 2009;61(10):1462-66.

Newer registries exist in California and New York City to provide similar estimates for Hispanics and Asians, and in the Indian Health Service for American Indians/Alaska Natives.


Developing and Implementing the Georgia Lupus Registry

Funding Number

U58/CCU422885

Target: Caucasians and African Americans in DeKalb and Fulton Counties for 2002-2004

Abstracts, Publications, Presentations

2008 American College of Rheumatology Scientific meeting

  • Lim et al. The Georgia Lupus Registry: The high utilization and direct cost of emergency care and hospital admissions in early SLE by ethnicity and gender (oral).
  • Thomas J et al. The Georgia Lupus Registry: A comparison of time to renal biopsy rates in patients diagnosed with SLE in a public hospital health system and private health facilities (poster).

2009 American College of Rheumatology Scientific Meeting

  • Lim et al. The Georgia Lupus Registry: Exploring Early Lupus Subtypes (poster).
  • Lim et al. The Georgia Lupus Registry: a population-based estimate of the incidence and prevalence of childhood-onset SLE (poster).

2010 American College of rheumatology Scientific meeting

  • Lim et al. The Georgia Lupus Registry: Health Care Utilization Rises During the Transition from Pediatric to Adult Systemic Lupus Erythematosus (SLE) Care.

Principal Investigator

S. Sam Lim, M.D.
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

Funding Number

U58/CCU522826-02

Target: Caucasians and African Americans in Washtenaw and Wayne Counties for 2002-2004

Abstracts, Publications, Presentations

2008 American College of Rheumatology Scientific meeting

  • Somers E et al. Michigan Lupus Epidemiology & Surveillance (MILES) Program: Features of SLE in a population-based registry of pediatric-onset patients (poster).
  • Somers E et al. Michigan Lupus Epidemiology & Surveillance (MILES) Program: Neurologic involvement among SLE patients in a population-based registry (oral).

2009 American College of Rheumatology Scientific Meeting

  • Somers et al. Michigan Lupus Epidemiology & Surveillance Program (MILES): Increase proportion of target-organ threatening involvement among male versus female SLE patients "(poster; awarded Notable Poster Ribbon)"

2010 International Congress on Autoimmunity

  • Marder W, Somers EC, Lewis EE, Francis S, Cagnoli PC, DeGuire P, Gordon C, Helmick CG. Leisen JC, Dhar JP, McCune WJ, MILES Group. Michigan Lupus Epidemiology & Surveillance Program (MILES): Patients presenting with cutaneous lupus as first symptom have delayed progression to SLE.

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

W. Joseph McCune, M.D.
Division of Rheumatology
Room 3918 Taubman Center, Box 0358
1500 E Medical Center Drive
Ann Arbor, MI 48109-0358
734-936-5561 (phone)
734-763-1253 (fax)
jmccune@med.umich.edu



California Lupus Surveillance Program

Funding Number

1U58DP002826-01 DP10-1011-02

Target: Hispanics and Asians in San Francisco and San Mateo Counties for 2007-2009

Project Director

Valerie Shipman, CLSP Project Manager
Health Program Specialist, Chronic Disease Surveillance and Epidemiology Section
Chronic Disease Surveillance and Research Branch
California Department of Public Health ]
1825 Bell Street, Suite 102
Sacramento, CA 95825
916.779.2680
Fax 916.779.0264
Valerie.Shipman@cdph.ca.gov


Manhattan Lupus Surveillance Program

Funding Number

1U58DP002826-01 DP10-1011-02

Target: Hispanics and Asians in the Borough of Manhattan for 2007-2009

Co-Principal Investigator

Hilary Parton
Bureau of Epidemiology Services
NYC Department of Health and Mental Hygiene
42-09 28th Street (CN #6), Long Island City NY 11101
347-396-4053
FAX 347-396-4136
hparton@health.nyc.gov

Co-Principal Investigator

Peter Izmirly, MD
Assistant Professor of Medicine
NYU School of Medicine
560 First Avenue, TH-407, NY NY 10016
212-263-5802
FAX: 212-263-0759
Peter.izmirly@nyumc.org


Indian Health Service Lupus Project

Funding Number

IAA# 10FED1003070

Target: American Indians/Alaska Natives in Alaska and Phoenix Areas (possibly Oklahoma and Northern Plains Areas as well) for 2007-2009

Principal Investigator

Elizabeth D. Ferucci, MD, MPH, IHS Lupus Project
Medical Researcher / Rheumatologist
Alaska Native Tribal Health Consortium
4315 Diplomacy Drive, ANC-HEP
Anchorage, Alaska 99508
Phone: 907-729-4591
Fax: 907-729-1570
EDFerucci@anthc.org
 

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