Lupus Landmark Study: A Prospective Registry and Biorepository

NCT ID: NCT05934149

Last Updated: 2025-08-15

Study Results

Results pending

The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.

Basic Information

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Recruitment Status

RECRUITING

Total Enrollment

3500 participants

Study Classification

OBSERVATIONAL

Study Start Date

2023-06-28

Study Completion Date

2035-12-31

Brief Summary

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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).

Detailed Description

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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.

Conditions

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Systemic Lupus Erythematosus (SLE) Lupus Nephritis Neuropsychiatric Systemic Lupus Erythematosus

Study Design

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Observational Model Type

COHORT

Study Time Perspective

PROSPECTIVE

Study Groups

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New Onset

Individuals with a new diagnosis of SLE

No interventions assigned to this group

LN Active

Individuals with a recent diagnosis of Lupus Nephritis

No interventions assigned to this group

Extra-renal Flare

Individuals who have experienced a recent flare

No interventions assigned to this group

Prevalent

Individuals with lupus who do not meet the criteria for one of the other cohorts

No interventions assigned to this group

Eligibility Criteria

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Inclusion Criteria

* Able to understand and comply with study procedures and voluntarily sign a written informed consent document
* Age 18 years or older at the time of enrollment
* Fulfill criteria for SLE based on one or more of the following classifications systems:

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

* Not able to obtain consent
* Not able to meet protocol visit requirements
* Pregnant at the time of enrollment
Minimum Eligible Age

18 Years

Maximum Eligible Age

110 Years

Eligible Sex

ALL

Accepts Healthy Volunteers

No

Sponsors

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Lupus Research Alliance

OTHER

Sponsor Role lead

Responsible Party

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Responsibility Role SPONSOR

Principal Investigators

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Sam Lim, MD, MPH

Role: PRINCIPAL_INVESTIGATOR

Emory University

Arezou Khosroshahi, MD

Role: PRINCIPAL_INVESTIGATOR

Emory University

Alfred Kim, MD, PhD

Role: PRINCIPAL_INVESTIGATOR

Washington University School of Medicine

Locations

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University of Alabama at Birmingham

Birmingham, Alabama, United States

Site Status RECRUITING

University of Arizona

Tucson, Arizona, United States

Site Status RECRUITING

Wallace Rheumatic Studies Center

Beverly Hills, California, United States

Site Status RECRUITING

University of Miami

Miami, Florida, United States

Site Status RECRUITING

Emory University

Atlanta, Georgia, United States

Site Status RECRUITING

University of Chicago

Chicago, Illinois, United States

Site Status RECRUITING

University of Massachusetts Memorial Health

Worcester, Massachusetts, United States

Site Status RECRUITING

Washington University

St Louis, Missouri, United States

Site Status RECRUITING

The Feinstein Institutes for Medical Research

Manhasset, New York, United States

Site Status NOT_YET_RECRUITING

Columbia University Medical Center

New York, New York, United States

Site Status NOT_YET_RECRUITING

Northwell Health

New York, New York, United States

Site Status RECRUITING

SUNY Upstate

Syracuse, New York, United States

Site Status RECRUITING

UNC Chapel Hill

Chapel Hill, North Carolina, United States

Site Status RECRUITING

The MetroHealth System

Cleveland, Ohio, United States

Site Status RECRUITING

Vanderbilt University Medical Center

Nashville, Tennessee, United States

Site Status RECRUITING

UT Southwestern Medical Center

Dallas, Texas, United States

Site Status RECRUITING

University of Calgary

Calgary, Alberta, Canada

Site Status RECRUITING

University of Manitoba

Winnipeg, Manitoba, Canada

Site Status RECRUITING

University Health Network/Toronto Western Hospital

Toronto, Ontario, Canada

Site Status RECRUITING

McGill University Health Centre

Montreal, Quebec, Canada

Site Status RECRUITING

CHU de Québec - Université Laval

Québec, Quebec, Canada

Site Status RECRUITING

Countries

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United States Canada

Central Contacts

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Lupus Nexus Director

Role: CONTACT

646-884-6084

Facility Contacts

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Christina Ndolo

Role: primary

Lydia Benitez

Role: primary

Karla Alvarez

Role: primary

Luis Enrique Arias Mejia

Role: primary

Niurka Colina

Role: backup

Kennedy Vela

Role: primary

John Varghese

Role: backup

Rennan Ruivivar

Role: primary

Yusra Irshad

Role: backup

Chelsea Boateng

Role: primary

Maribel Chebuske

Role: primary

Andrew Shaw

Role: primary

Stephen Suh

Role: primary

Radha Puran

Role: primary

Abdul Rehman

Role: backup

Bryan Blaker

Role: primary

(315) 464-6481

Roger Huamani Velasquez

Role: primary

Anthony Trujillo

Role: backup

Antoniy Fulmes

Role: primary

Pamela Krueger

Role: primary

Margaret Wright

Role: primary

Azza Mutwally Badr

Role: backup

Michaela Speirs

Role: primary

Rhonda Silva

Role: primary

204-787-1969

Sydney Weisz

Role: primary

Michele Tobaly

Role: primary

Nathalie Amiable

Role: primary

Other Identifiers

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LNX-Landmark-001

Identifier Type: -

Identifier Source: org_study_id

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