Evidence map›Paper›PMID 39919891›Full record

GuidelineAnnals of the rheumatic diseases2025

Development of CARRA/PReS-endorsed consensus Core and Expanded Datasets in childhood-onset systemic lupus erythematosus for international registry-based research.

Rebecca E Sadun, Jennifer C Cooper, Alexandre Belot, Tadej Avcin, Amita Aggarwal, Jenny Ainsworth, Alisha Akinsete, Stacy P Ardoin, Michael W Beresford, Lynette Bortey and 36 more

Abstract readPractice Guideline
PubMed Full text at PMC Publisher
In one paragraph

Guideline in Annals of the rheumatic diseases, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
2citing papers in PubMed, 1 pooled it
–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.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

2 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Guideline
  2. Review
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

46 authors.

Rebecca E SadunDepartments of Medicine and Pediatrics, Duke University School of Medicine, Durham, North Carolina, USA.
Jennifer C CooperDepartment of Pediatrics, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
Alexandre BelotService de Pediatrie, Centre Hospitalier Universitaire de Lyon, Lyon, France. Electronic address: https://x.com/AlexandreBelot.
Tadej AvcinDepartment of Allergology, Rheumatology and Clinical Immunology, University Medical Centre, Ljubljana, Slovenia.
Amita AggarwalDepartment of Clinical Immunology and Rheumatology, Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow, Uttar Pradesh, India.
Jenny AinsworthDepartment of Women's & Children's Health, University of Liverpool, Liverpool, UK; Department of Paediatric Rheumatology, Alder Hey Children's NHS Foundation Trust, Liverpool, UK.
Alisha AkinseteDepartment of Pediatrics, Hospital for Special Surgery, New York, New York, USA.
Stacy P ArdoinDepartments of Medicine and Pediatrics, The Ohio State University College of Medicine, Columbus, Ohio, USA.
Michael W BeresfordDepartment of Women's & Children's Health, University of Liverpool, Liverpool, UK; Department of Paediatric Rheumatology, Alder Hey Children's NHS Foundation Trust, Liverpool, UK.
Lynette BorteyTARGET LUPUS PPIE Group, University of Liverpool, Liverpool, UK.
Hermine I BrunnerDepartment of Pediatrics, University of Cincinnati, Cincinnati, Ohio, USA.
Joyce C ChangDepartment of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA.
Coziana CiurtinCentre for Rheumatology, University College London, London, UK.
Ashley DaftaryUniversity of Nevada Reno School of Social Work, Reno, Nevada, USA.
Barbara EberhardDepartment of Pediatrics, Hofstra Northwell School of Medicine at Hofstra University, Hempstead, New York, USA.
Candace H FeldmanDivision of Rheumatology, Inflammation and Immunity, Brigham and Women's Hospital, Boston, Massachusetts, USA.
Christian M HedrichDepartment of Women's & Children's Health, University of Liverpool, Liverpool, UK; Department of Paediatric Rheumatology, Alder Hey Children's NHS Foundation Trust, Liverpool, UK.
Aimee O HershThe University of Utah School of Medicine, Salt Lake City, Utah, USA.
Linda T HirakiDivision of Rheumatology and Department of Pediatrics, The Hospital for Sick Children, Toronto, Ontario, Canada; Division of Rheumatology, University of Toronto Temerty Faculty of Medicine, Toronto, Ontario, Canada.
David A IsenbergCentre for Rheumatology, University College London, London, UK.
Sylvia KamphuisErasmus MC University Medical Center, Rotterdam, The Netherlands.
Andrea M KnightDivision of Rheumatology and Department of Pediatrics, The Hospital for Sick Children, Toronto, Ontario, Canada; Division of Rheumatology, University of Toronto Temerty Faculty of Medicine, Toronto, Ontario, Canada.
Lou LambertTARGET LUPUS PPIE Group, University of Liverpool, Liverpool, UK.
Deborah M LevyDivision of Rheumatology and Department of Pediatrics, The Hospital for Sick Children, Toronto, Ontario, Canada; Division of Rheumatology, University of Toronto Temerty Faculty of Medicine, Toronto, Ontario, Canada.
Stephen D MarksNIHR Great Ormond Street Hospital Biomedical Research Centre, University College London, London, UK; Institute of Child Health and Department of Paediatric Nephrology, Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
Naomi MaxwellTARGET LUPUS PPIE Group, University of Liverpool, Liverpool, UK.
Angela MigowaDepartment of Pediatrics, The Aga Khan University Medical College East Africa, Nairobi, Kenya.
Katharine MooreDepartment of Pediatrics, University of Colorado Anschutz Medical Campus, Aurora, Colorado, USA.
Seza OzenDepartment of Pediatrics, Hacettepe University, Ankara, Turkey.
Rosalind Ramsey-GoldmanDepartment of Medicine, Northwestern University Feinberg School of Medicine, Chicago, Illinois, USA.
Angelo RavelliDirezione Scientifica, IRCCS Istituto Giannina Gaslini and Dipartimento di Neuroscienze, Riabilitazione, Oftalmologia, Genetica e Scienze Materno-Infantili, Università degli Studi di Genova, Genova, Italy.
Bryce B ReeveDepartments of Population Health Sciences and Pediatrics, Duke University School of Medicine, Durham, North Carolina, USA.
Tamar B RubinsteinChildren's Hospital at Montefiore, New York, New York, USA.
Claudia Saad-MagalhaesPediatric Rheumatology Division, Faculdade de Medicina de Botucatu, Universidade Estadual Paulista (UNESP), Botucatu, Brazil.
Sujata SawhneyInstitute of Child Health, Paediatric Rheumatology Division, Sir Ganga Ram Hospital, New Delhi, India.
Laura E SchanbergDepartment of Pediatrics, Duke University School of Medicine, Durham, North Carolina, USA.
Emily von SchevenDepartment of Pediatrics, University of California San Francisco, San Francisco, California, USA.
Christiaan ScottDepartment of Child and Adolescent Health, University of Cape Town, Rondebosch, South Africa; Division of Pediatric Rheumatology, University of Ottawa, Ottawa, Ontario, Canada.
Mary Beth SonDepartment of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA.
Gladys TonyPatient/Caregiver Representative, Childhood Arthritis and Rheumatology Research Alliance, Milwaukee, Wisconsin, USA.
Elissa R WeitzmanDepartment of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA. Electronic address: https://x.com/Elissa_Weitzman.
Scott E WenderferDepartment of Pediatrics, The University of British Columbia, Vancouver, Columbia, Canada; BC Children's Hospital, Vancouver, Columbia, Canada. Electronic address: https://x.com/PedsLupusRenal.
Alisha WoodsidePatient/Caregiver Representative, Childhood Arthritis and Rheumatology Research Alliance, Milwaukee, Wisconsin, USA.
Laura B LewandowskiNational Institutes of Health, National Institute of Arthritis and Musculoskeletal and Skin Diseases, Bethesda, Maryland, USA.
Eve Md SmithDepartment of Women's & Children's Health, University of Liverpool, Liverpool, UK; Department of Paediatric Rheumatology, Alder Hey Children's NHS Foundation Trust, Liverpool, UK. Electronic address: esmith8@liverpool.ac.uk.
CARRA SLE Committee and PReS Lupus Working Party

Funding

Genetics and pathophysiology of systemic lupus erythematosus in global populationsZIAAR041214 · NIAMS · NATIONAL INSTITUTE OF ARTHRITIS AND MUSCULOSKELETAL AND SKIN DISEASES · PI LEWANDOWSKI, LAURA · 2021 to 2025
$4.5M
Intramural NIH HHS Z99 AR999999Intramural NIH HHS ZIA AR041214
6 · The paper itself

Abstract

objectivesChildhood-onset systemic lupus erythematosus (cSLE), representing 15%-20% of individuals with SLE, has been difficult to study globally due to differences between registries. This initiative, supported by Childhood Arthritis Rheumatology Research Alliance (CARRA) and Paediatric Rheumatology European Society (PReS), aims to create Core and Expanded cSLE Datasets to standardise and enhance research worldwide.

methods21 international cSLE experts and 4 patients participated in a Delphi process (questionnaires, 2 topic-specific focus groups and 3 virtual consensus meetings) to create 2 standardised cSLE datasets. The Core cSLE Dataset was designed to include data essential to meaningful clinical research across many settings. The Expanded cSLE Dataset was designed for centres able to consistently collect data to address broader research questions. Final data items for the Core and Expanded datasets were determined by consensus defined as >80% agreement) using an adapted nominal group technique and voting.

resultsThe resulting Core cSLE Dataset contains 46 items, including demographics, clinical features, laboratory results, medications and significant adverse events. The Expanded cSLE Dataset adds 26 additional items and includes patient-reported outcomes. Consensus was also achieved regarding the frequency and time points for data collection: baseline, quarterly follow-up visits, annually and flare visits.

conclusionStandardised Core and Expanded cSLE Datasets for registry-based international cSLE research were defined through the consensus of global experts and patient/caregiver representatives, endorsed by CARRA and PReS. These datasets incorporate disease-specific and patient-specific features, optimised for diverse settings to facilitate international collaborative research for children and adolescents with SLE worldwide.

Indexed as

Datasets as TopicLupus Erythematosus, SystemicRegistriesAdolescentAge of OnsetBiomedical ResearchChildConsensusDelphi TechniqueFemaleHumansMaleRheumatologyChildHealth CareLupus ErythematosusLupus NephritisOutcome AssessmentPatient Reported Outcome MeasuresSystemic

Identifiers

PMID39919891
PMCPMC12345348

What Socratic holds

Textmetadata
LicenceTDM
Read underepoch 390

Registered trials

None linked

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 Socratic graph.