Evidence map›Paper›PMID 42521601›Full record

Observational studyLupus science & medicine2026

Lupus Nexus: developing a prospective registry, biorepository and data exchange platform to foster global collaborations, accelerate research innovation and advance precision medicine in lupus.

Teodora P Staeva, Arezou Khosroshahi, Alfred Hyoungju Kim, Devon D Kelly, Mary Jo Fekete, Kechi Anyadike, Alyssa Baloski, Shannon K Barriteau, Amonte Davis, Angela M Mitchell and 28 more

Registry-linked trialAbstract readObservational Study
PubMed Full text at PMC Publisher
In one paragraph

Observational study in Lupus science & medicine, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. It is linked to trial NCT05934149 (Lupus Nexus Landmark Study), which is not on this map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

NCT05934149 recruitingnot on this map

Lupus Nexus Landmark Study: A Prospective Registry and Biorepository

Typeobservational_patient_registrySponsorLupus Research AllianceRan2023 to 2035Enrolled3,500ConditionsSystemic Lupus Erythematosus (SLE), Lupus Nephritis, Neuropsychiatric Systemic Lupus Erythematosus
3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

38 authors.

Teodora P StaevaResearch, Lupus Research Alliance, New York, New York, USA tstaeva@lupusresearch.org sslim@emory.edu.ORCID http://orcid.org/0009-0003-3196-4371
Arezou KhosroshahiEmory University School of Medicine, Atlanta, Georgia, USA.
Alfred Hyoungju KimMedicine/Rheumatology, Washington University in Saint Louis School of Medicine, Saint Louis, Missouri, USA.ORCID http://orcid.org/0000-0003-4074-0516
Devon D KellyResearch, Lupus Research Alliance, New York, New York, USA.
Mary Jo FeketeResearch, Lupus Research Alliance, New York, New York, USA.
Kechi AnyadikeResearch, Lupus Research Alliance, New York, New York, USA.
Alyssa BaloskiResearch, Lupus Research Alliance, New York, New York, USA.
Shannon K BarriteauResearch, Lupus Research Alliance, New York, New York, USA.
Amonte DavisResearch, Lupus Research Alliance, New York, New York, USA.
Angela M MitchellResearch, Lupus Research Alliance, New York, New York, USA.ORCID http://orcid.org/0000-0003-1955-5850
Nikolay NepochatovResearch, Lupus Research Alliance, New York, New York, USA.
Grant RoeslerResearch, Lupus Research Alliance, New York, New York, USA.
Melissa Rawley-PayneDaiichi Sankyo Inc, Basking Ridge, New Jersey, USA.
William ApruzzeseInflammation and Immunology Research Unit, Pfizer Inc, New York, New York, USA.
Amanda CharbonneauGeneral Dynamics Information Technology Inc, Falls Church, Virginia, USA.
Christopher DowdAmerican Society of Hematology, Washington, District of Columbia, USA.
Paul R FortinMedicine - Rheumatology, Centre Hospitalier de l'Université Laval, Quebec City, Ontario, Canada.ORCID http://orcid.org/0000-0002-7278-2596
Paul HooverBrigham and Women's Hospital Department of Medicine, Boston, Massachusetts, USA.
David R KarpDepartment of Internal Medicine, University of Texas Southwestern Medical Center at Dallas, Dallas, Texas, USA.ORCID http://orcid.org/0000-0002-9005-1690
Fotios KoumpourasYale School of Medicine, New Haven, Connecticut, USA.ORCID http://orcid.org/0000-0002-4530-7626
Martin LewisFormer LRA Young Leaders Board member, New York, New York, USA.
Meggan MackayThe Center for Autoimmune & Musculoskeletal Disease, Feinstein Institute for Medical Research, Manhasset, New York, USA.
Paola Mina-OsorioImmunovant Inc, New York, New York, USA.
Christine PeschkenUniversity of Manitoba, Winnipeg, Manitoba, Canada.
Jamie ShawEMD Serono Research and Development Institute, Inc., an affiliate of Merck KGaA, Billerica, Massachusetts, USA.
Dayani TippleAstraZeneca US, Wilmington, Delaware, USA.
Zahi ToumaDivision of Rheumatology, Schroeder Arthritis Institute, Krembil Research Institute, University Health Network, Toronto, Ontario, Canada.ORCID http://orcid.org/0000-0001-5177-2076
Albert WangBristol Myers Squibb, Princeton, New Jersey, USA.
Ruth WilsonMilliporeSigma, Burlington, Massachusetts, USA.
Stacie BellLupus Therapeutics, Lupus Research Alliance, New York, New York, USA.
Alison LeeFormer LRA Young Leaders Board member, New York, New York, USA.
Marc S HurlbertMelanoma Research Alliance, Washington, District of Columbia, USA.ORCID http://orcid.org/0000-0003-3301-3572
Jean Stimola-SposaroBristol Myers Squibb, Princeton, New Jersey, USA.
Virginia PascualDrukier Institute for Children's Health, Weill Cornell Medicine, New York, New York, USA.
Inaki SanzEmory University School of Medicine, Atlanta, Georgia, USA.
Peter SchaferPulmonary Fibrosis Foundation, Chicago, Illinois, USA.
S Sam LimDivision of Rheumatology, Emory University, Atlanta, Georgia, USA tstaeva@lupusresearch.org sslim@emory.edu.ORCID http://orcid.org/0000-0003-2361-0787
Lupus Landmark Study Investigators

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionSLE remains a disease of high unmet medical need. Protean manifestations and the lack of clear understanding of aetiology, pathogenesis and disease subgroups make it difficult to develop and employ targeted therapeutic approaches. Community-wide access to a longitudinal, highly curated patient dataset with linked biospecimens and cellular/molecular data is critical to enable advances and is now provided by Lupus Nexus (LNx). In this study, we describe the development of this unique resource with exemplary patient engagement. METHODS AND ANALYSIS: LNx, developed with guidance from over 100 partners, includes a prospective, longitudinal observational study, the Lupus Landmark Study (LLS), that will enrol up to 3500 adults living with lupus into four cohorts and will follow them over 5 years. The registry data comprises medical information, clinician-reported and patient-reported outcomes while the biorepository includes whole blood, urine, saliva, stool and tissue which are available to the research community for a broad range of analyses. Importantly, since all raw data from the biospecimen analyses will be deposited in LNx, it will amass a deep and comprehensive dataset over time. As of 25 March 2026, there are 705 enrolled participants (13.3% new onset, 27.4% extrarenal flare, 23.3% active lupus nephritis and 35% prevalent cases, with 37.6% black, 38% white and 12.6% Asian/Pacific Islander patients). Over 15 400 unique samples have been collected and specific analyses are underway.All data and samples from LNx are available via its Data Repository Exchange and Analytics platforM (DREAM). Importantly, a dedicated patient portal within DREAM enables participants to view their study data, connect with others and learn about the research emerging from projects using LNx. TRIAL REGISTRATION NUMBER: NCT05934149.

Indexed as

Biological Specimen BanksLupus Erythematosus, SystemicPrecision MedicineRegistriesAdultFemaleHumansLongitudinal StudiesProspective StudiesLupus NephritisOutcome Assessment, Health CarePatient Reported Outcome MeasuresSystemic Lupus Erythematosus

Identifiers

PMID42521601
PMCPMC13423139

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Registered trials

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.