Lupus Landmark Study: A Prospective Registry and Biorepository
Start Date
6/28/2023
Completion Date
12/1/2035
Summary
The purpose of the registry and biorepository is to provide a mechanism to store clinical data, linked biospecimens and molecular data to support the conduct of future research on Systemic Lupus Erythematosus (SLE), including Lupus Nephritis (LN).
Detailed Description
This is a multicenter registry and biorepository conducted in the United States (US) and Canada. The registry will enroll over 3500 individuals with SLE over the course of five years into one of following four cohorts: * New Onset: individuals with a new diagnosis of SLE * Active Lupus Nephritis: individuals with a recent diagnosis of LN * Extra-Renal Lupus Flare: individuals who have experienced a recent flare * Prevalent Cases: individuals with lupus who do not meet the criteria for one of the other cohorts The registry data will include but is not limited to: patient demographics, medical history, clinician-reported outcomes (ClinROs), patient-reported outcomes (PROs), social history and determinants of health, and environmental exposures. Participants will also be asked to allow access to their medical records. Biological samples, including whole blood, urine, saliva, stool and tissue will be collected throughout the study. These biospecimens will be used for a broad range of analyses, including genetics, genomics, proteomics, biomarker discovery and microbiome profiling.
Eligibility Criteria
Age Range: 18 years to 110 years
Conditions
Locations
University of Alabama at Birmingham
Birmingham, Alabama 35205
United States
University of Arizona
Tucson, Arizona 85714
United States
Wallace Rheumatic Studies Center
Beverly Hills, California 90210
United States
UCLA
Los Angeles, California 90024
United States
Georgetown University
Washington D.C., District of Columbia 20057
United States
University of Miami
Miami, Florida 33146
United States
Emory University
Atlanta, Georgia 30322
United States
University of Chicago
Chicago, Illinois 60637
United States
Brigham and Women's Hospital
Boston, Massachusetts 02115
United States
University of Massachusetts Memorial Health
Worcester, Massachusetts 01605
United States
Washington University
St Louis, Missouri 63130
United States
The Feinstein Institutes for Medical Research
Manhasset, New York 11030
United States
Columbia University Medical Center
New York, New York 10032
United States
Northwell Health
New York, New York 11021
United States
SUNY Upstate
Syracuse, New York 13210
United States
UNC Chapel Hill
Chapel Hill, North Carolina 27599
United States
The MetroHealth System
Cleveland, Ohio 44109
United States
Vanderbilt University Medical Center
Nashville, Tennessee 37232
United States
UT Southwestern Medical Center
Dallas, Texas 75390
United States
University of Calgary
Calgary, Alberta T2N 1N4
Canada
University of Alberta Hospital
Edmonton, Alberta AB T6G 2X8
Canada
University of Manitoba
Winnipeg, Manitoba
Canada
University Health Network/Toronto Western Hospital
Toronto, Ontario M5G 2C4
Canada
McGill University Health Centre
Montreal, Quebec H3H 2R9
Canada
CHU de Québec - Université Laval
Québec, Quebec G1R 2J6
Canada