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Massive lupus registry launches to unlock secrets of the disease

NCT ID NCT05934149

Knowledge-focused Sponsor: Lupus Research Alliance Source: ClinicalTrials.gov ↗

What the study statuses mean

This study's is highlighted.

Recruitment status, easiest to join first

Recruiting now This study
This trial is taking on new participants right now.
Not yet recruiting
Registered, but not yet taking participants.
By invitation only
Not open to general applications. Only people the study team invites can take part.
Paused
Paused for now. It may or may not start again.
Ongoing
Running, but no longer taking on new participants.
Completed
The trial has finished. Results may not be published yet.
Stopped early
Stopped early, before it reached the end. That can be for many reasons, including safety.
Cancelled
Cancelled before anyone took part.

Expanded access (not trials)

Expanded access
Not a trial. This treatment can be requested outside a study, case by case, for people who qualify.
Expanded access (paused)
Not a trial. The treatment can normally be requested outside a study, but is unavailable right now.
Expanded access (ended)
Not a trial. The treatment could once be requested outside a study, but no longer can.
Approved
The treatment has been approved, so it is available normally rather than through this programme.

When the status isn't known

Details not published
The full record has not been published yet, so there is little to show here.
Status unknown
This status has not been confirmed recently, so it may be out of date.

First seen Jun 27, 2026 · Last updated Jun 27, 2026

Summary

This study is building a large registry and biorepository of 3,500 adults with systemic lupus erythematosus (SLE), including those with lupus nephritis and neuropsychiatric lupus. Participants will provide clinical data and biospecimens over time, creating a resource for future research to identify genetic drivers, understand disease mechanisms, and link biomarkers to treatment responses. The goal is to accelerate discoveries that could improve diagnosis and care for lupus patients.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

What this could lead to
If successful, this registry will provide a rich resource for researchers to discover genetic and biological markers, potentially leading to better treatments and personalized care for lupus.
What could go wrong
This is an observational study, not a treatment trial. It will not directly test any new therapy, and its value depends on future research using the collected data and samples.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

About 3,500 people

The number the study aims to enrol. It can still change while the study runs.

Started

Jun 2023

Expected to finish

Dec 2035

An estimate. End dates often move.

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Patients with SLE

Ages

18 to 110 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

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

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Conditions

The condition(s) this trial relates to.

central nervous system lupus lupus nephritis systemic lupus erythematosus

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

Lupus nephritis Neuropsychiatric systemic lupus erythematosus Systemic lupus erythematosus (SLE)

How to take part

Only the study team decides who joins. These are the ways to reach them.

  1. The places running it

    25 sites in 2 countries. The list below names each one and where it is.

  2. The official record

    ClinicalTrials.gov lists the study team's own contact details, including names and phone numbers. We don't republish those.

    Open the record ↗

  3. A doctor treating you

    A doctor who knows your case can contact a study site on your behalf, and can tell you whether this study is worth pursuing at all.

Contacts and locations

Locations

  • Brigham and Women's Hospital

    RECRUITING

    Boston, Massachusetts, 02115, United States

  • CHU de Québec - Université Laval

    RECRUITING

    Québec, Quebec, G1R 2J6, Canada

  • Columbia University Medical Center

    NOT_YET_RECRUITING

    New York, New York, 10032, United States

  • Emory University

    RECRUITING

    Atlanta, Georgia, 30322, United States

  • Georgetown University

    NOT_YET_RECRUITING

    Washington D.C., District of Columbia, 20057, United States

  • McGill University Health Centre

    RECRUITING

    Montreal, Quebec, H3H 2R9, Canada

  • Northwell Health

    RECRUITING

    New York, New York, 11021, United States

  • SUNY Upstate

    RECRUITING

    Syracuse, New York, 13210, United States

  • The Feinstein Institutes for Medical Research

    RECRUITING

    Manhasset, New York, 11030, United States

  • The MetroHealth System

    RECRUITING

    Cleveland, Ohio, 44109, United States

  • UCLA

    NOT_YET_RECRUITING

    Los Angeles, California, 90024, United States

  • UNC Chapel Hill

    RECRUITING

    Chapel Hill, North Carolina, 27599, United States

  • UT Southwestern Medical Center

    RECRUITING

    Dallas, Texas, 75390, United States

  • University Health Network/Toronto Western Hospital

    RECRUITING

    Toronto, Ontario, M5G 2C4, Canada

  • University of Alabama at Birmingham

    RECRUITING

    Birmingham, Alabama, 35205, United States

  • University of Alberta Hospital

    RECRUITING

    Edmonton, Alberta, AB T6G 2X8, Canada

  • University of Arizona

    RECRUITING

    Tucson, Arizona, 85714, United States

  • University of Calgary

    RECRUITING

    Calgary, Alberta, T2N 1N4, Canada

  • University of Chicago

    RECRUITING

    Chicago, Illinois, 60637, United States

  • University of Manitoba

    RECRUITING

    Winnipeg, Manitoba, Canada

  • University of Massachusetts Memorial Health

    RECRUITING

    Worcester, Massachusetts, 01605, United States

  • University of Miami

    RECRUITING

    Miami, Florida, 33146, United States

  • Vanderbilt University Medical Center

    RECRUITING

    Nashville, Tennessee, 37232, United States

  • Wallace Rheumatic Studies Center

    RECRUITING

    Beverly Hills, California, 90210, United States

  • Washington University

    RECRUITING

    St Louis, Missouri, 63130, United States

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