What to know
Patient registries are collections of data and information related to patients with a specific disease diagnosis. CDC funds five regional registries that primarily focus on patients with systemic lupus erythematosus (SLE) and cutaneous lupus. Registries play an important role in knowing how many people have lupus and determining the impact it has on their lives.
Overview
CDC is investing in lupus research by funding five registries across the United States to advance:
- Our understanding of who gets lupus.
- How it affects those living with it.
- Our understanding of health disparities related to lupus.
Five currently funded registries
- Emory University (Georgia)
- Registry name: Georgians Organized Against Lupus (GOAL) Cohort: Addressing Health Disparities in Lupus through Social Determinants of Health
- Registry name: Georgians Organized Against Lupus (GOAL) Cohort: Addressing Health Disparities in Lupus through Social Determinants of Health
- Mayo Clinic (Minnesota)
- Registry name: Lupus Midwest Network (LUMEN).
- Registry name: Lupus Midwest Network (LUMEN).
- New York University
- Registry name: Epidemiology to Advance Lupus Treatment and Health
- Registry name: Epidemiology to Advance Lupus Treatment and Health
- University of California, San Francisco
- Registry name: California Lupus Epidemiology Study (CLUES)
- Registry name: California Lupus Epidemiology Study (CLUES)
- University of Utah
- Registry name: Improving Pediatric Lupus Care and Outcomes through the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Lupus Registry
- Registry name: Improving Pediatric Lupus Care and Outcomes through the Childhood Arthritis and Rheumatology Research Alliance (CARRA) Lupus Registry
How the data are used
The registries are working together to:
- Gather information from patients with SLE or cutaneous lupus to determine how the disease affects their lives.
- Document patient backgrounds, including
- Treatment history.
- Access to health care.
- Lupus outcomes and and the presence of other conditions.
- Treatment history.
- Support state-of-the-art collection of information from patients themselves and from their medical records.
- Advance understanding of health disparities related to lupus.
- Use data from each regional registry to undertake national research.
- Support research on the transition from pediatric to adult care for lupus.