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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).
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:
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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| New Onset | Individuals with a new diagnosis of SLE | ||
| LN Active | Individuals with a recent diagnosis of Lupus Nephritis | ||
| Extra-renal Flare | Individuals who have experienced a recent flare | ||
| Prevalent | Individuals with lupus who do not meet the criteria for one of the other cohorts |
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| Measure | Description | Time Frame |
|---|---|---|
| Identify genetic drivers and antigenic targets, to elucidate mechanistic heterogeneity and correlate biomarkers to therapeutic responses. | Resource intended to be used to address research questions based upon three categorical time frames (historical, cross-sectional, and longitudinal) with specified scientific topics proposed upon request to access the resources. | up to 25 years |
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Inclusion Criteria:
Systemic Lupus Erythematosus International Collaborating Clinic (SLICC) 2012 criteria; European Alliance of Associations for Rheumatology (EULAR)/American College of Rheumatology (ACR) 2019 criteria; 1997 revised ACR criteria; or Lupus is present per clinical assessment.
Exclusion Criteria:
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Patients with SLE
| Name | Role | Phone | Extension | |
|---|---|---|---|---|
| Lupus Nexus Director | Contact | 646-884-6084 | lupusnexus@lupusresearch.org |
| Name | Affiliation | Role |
|---|---|---|
| Sam Lim, MD, MPH | Emory University | Principal Investigator |
| Arezou Khosroshahi, MD | Emory University | Principal Investigator |
| Alfred Kim, MD, PhD |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| University of Alabama at Birmingham | Recruiting | Birmingham | Alabama | 35205 | United States |
De-identified data and specimens may be provided to other researchers for additional research use.
Upon request, data and specimens may be made available after review by study team.
The study team will review requests on an individual basis.
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Whole blood, blood derivatives, urine, stool, saliva, tissue
| Washington University School of Medicine |
| Principal Investigator |
| University of Arizona | Recruiting | Tucson | Arizona | 85714 | United States |
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| Wallace Rheumatic Studies Center | Recruiting | Beverly Hills | California | 90210 | United States |
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| UCLA | Not yet recruiting | Los Angeles | California | 90024 | United States |
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| Georgetown University | Not yet recruiting | Washington D.C. | District of Columbia | 20057 | United States |
|
| University of Miami | Recruiting | Miami | Florida | 33146 | United States |
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| Emory University | Recruiting | Atlanta | Georgia | 30322 | United States |
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| University of Chicago | Recruiting | Chicago | Illinois | 60637 | United States |
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| Brigham and Women's Hospital | Recruiting | Boston | Massachusetts | 02115 | United States |
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| University of Massachusetts Memorial Health | Recruiting | Worcester | Massachusetts | 01605 | United States |
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| Washington University | Recruiting | St Louis | Missouri | 63130 | United States |
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| The Feinstein Institutes for Medical Research | Recruiting | Manhasset | New York | 11030 | United States |
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| Columbia University Medical Center | Not yet recruiting | New York | New York | 10032 | United States |
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| Northwell Health | Recruiting | New York | New York | 11021 | United States |
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| SUNY Upstate | Recruiting | Syracuse | New York | 13210 | United States |
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| UNC Chapel Hill | Recruiting | Chapel Hill | North Carolina | 27599 | United States |
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| The MetroHealth System | Recruiting | Cleveland | Ohio | 44109 | United States |
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| Vanderbilt University Medical Center | Recruiting | Nashville | Tennessee | 37232 | United States |
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| UT Southwestern Medical Center | Recruiting | Dallas | Texas | 75390 | United States |
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| University of Calgary | Recruiting | Calgary | Alberta | T2N 1N4 | Canada |
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| University of Alberta Hospital | Recruiting | Edmonton | Alberta | AB T6G 2X8 | Canada |
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| University of Manitoba | Recruiting | Winnipeg | Manitoba | Canada |
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| University Health Network/Toronto Western Hospital | Recruiting | Toronto | Ontario | M5G 2C4 | Canada |
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| McGill University Health Centre | Recruiting | Montreal | Quebec | H3H 2R9 | Canada |
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| CHU de Québec - Université Laval | Recruiting | Québec | Quebec | G1R 2J6 | Canada |
|
| ID | Term |
|---|---|
| D008180 | Lupus Erythematosus, Systemic |
| D008181 | Lupus Nephritis |
| D020945 | Lupus Vasculitis, Central Nervous System |
| ID | Term |
|---|---|
| D003240 | Connective Tissue Diseases |
| D017437 | Skin and Connective Tissue Diseases |
| D001327 | Autoimmune Diseases |
| D007154 | Immune System Diseases |
| D005921 | Glomerulonephritis |
| D009393 | Nephritis |
| D007674 | Kidney Diseases |
| D014570 | Urologic Diseases |
| D052776 | Female Urogenital Diseases |
| D005261 | Female Urogenital Diseases and Pregnancy Complications |
| D000091642 | Urogenital Diseases |
| D052801 | Male Urogenital Diseases |
| D008590 | Meningoencephalitis |
| D020805 | Central Nervous System Viral Diseases |
| D002494 | Central Nervous System Infections |
| D007239 | Infections |
| D020293 | Vasculitis, Central Nervous System |
| D020274 | Autoimmune Diseases of the Nervous System |
| D009422 | Nervous System Diseases |
| D002561 | Cerebrovascular Disorders |
| D001927 | Brain Diseases |
| D002493 | Central Nervous System Diseases |
| D004660 | Encephalitis |
| D000090862 | Neuroinflammatory Diseases |
| D008581 | Meningitis |
| D014652 | Vascular Diseases |
| D002318 | Cardiovascular Diseases |
| D014657 | Vasculitis |
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