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

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Autor(es): dc.contributorDuke University School of Medicine-
Autor(es): dc.contributorUniversity of Colorado Anschutz Medical Campus-
Autor(es): dc.contributorCentre Hospitalier Universitaire de Lyon-
Autor(es): dc.contributorUniversity Medical Centre-
Autor(es): dc.contributorSanjay Gandhi Post Graduate Institute of Medical Sciences-
Autor(es): dc.contributorUniversity of Liverpool-
Autor(es): dc.contributorAlder Hey Children's NHS Foundation Trust-
Autor(es): dc.contributorHospital for Special Surgery-
Autor(es): dc.contributorThe Ohio State University College of Medicine-
Autor(es): dc.contributorUniversity of Cincinnati-
Autor(es): dc.contributorHarvard Medical School-
Autor(es): dc.contributorUniversity College London-
Autor(es): dc.contributorUniversity of Nevada Reno School of Social Work-
Autor(es): dc.contributorHofstra Northwell School of Medicine at Hofstra University-
Autor(es): dc.contributorBrigham and Women's Hospital-
Autor(es): dc.contributorThe University of Utah School of Medicine-
Autor(es): dc.contributorThe Hospital for Sick Children-
Autor(es): dc.contributorUniversity of Toronto Temerty Faculty of Medicine-
Autor(es): dc.contributorErasmus MC University Medical Center-
Autor(es): dc.contributorGreat Ormond Street Hospital for Children NHS Foundation Trust-
Autor(es): dc.contributorThe Aga Khan University Medical College East Africa-
Autor(es): dc.contributorHacettepe University-
Autor(es): dc.contributorNorthwestern University Feinberg School of Medicine-
Autor(es): dc.contributorUniversità degli Studi di Genova-
Autor(es): dc.contributorChildren's Hospital at Montefiore-
Autor(es): dc.contributorUniversidade Estadual Paulista (UNESP)-
Autor(es): dc.contributorSir Ganga Ram Hospital-
Autor(es): dc.contributorUniversity of California San Francisco-
Autor(es): dc.contributorUniversity of Cape Town-
Autor(es): dc.contributorUniversity of Ottawa-
Autor(es): dc.contributorChildhood Arthritis and Rheumatology Research Alliance-
Autor(es): dc.contributorThe University of British Columbia-
Autor(es): dc.contributorBC Children's Hospital-
Autor(es): dc.contributorNational Institute of Arthritis and Musculoskeletal and Skin Diseases-
Autor(es): dc.creatorSadun, Rebecca E.-
Autor(es): dc.creatorCooper, Jennifer C.-
Autor(es): dc.creatorBelot, Alexandre-
Autor(es): dc.creatorAvcin, Tadej-
Autor(es): dc.creatorAggarwal, Amita-
Autor(es): dc.creatorAinsworth, Jenny-
Autor(es): dc.creatorAkinsete, Alisha-
Autor(es): dc.creatorArdoin, Stacy P.-
Autor(es): dc.creatorBeresford, Michael W.-
Autor(es): dc.creatorBortey, Lynette-
Autor(es): dc.creatorBrunner, Hermine I.-
Autor(es): dc.creatorChang, Joyce C.-
Autor(es): dc.creatorCiurtin, Coziana-
Autor(es): dc.creatorDaftary, Ashley-
Autor(es): dc.creatorEberhard, Barbara-
Autor(es): dc.creatorFeldman, Candace H.-
Autor(es): dc.creatorHedrich, Christian M.-
Autor(es): dc.creatorHersh, Aimee O.-
Autor(es): dc.creatorHiraki, Linda T.-
Autor(es): dc.creatorIsenberg, David A.-
Autor(es): dc.creatorKamphuis, Sylvia-
Autor(es): dc.creatorKnight, Andrea M.-
Autor(es): dc.creatorLambert, Lou-
Autor(es): dc.creatorLevy, Deborah M.-
Autor(es): dc.creatorMarks, Stephen D.-
Autor(es): dc.creatorMaxwell, Naomi-
Autor(es): dc.creatorMigowa, Angela-
Autor(es): dc.creatorMoore, Katharine-
Autor(es): dc.creatorOzen, Seza-
Autor(es): dc.creatorRamsey-Goldman, Rosalind-
Autor(es): dc.creatorRavelli, Angelo-
Autor(es): dc.creatorReeve, Bryce B.-
Autor(es): dc.creatorRubinstein, Tamar B.-
Autor(es): dc.creatorSaad-Magalhaes, Claudia-
Autor(es): dc.creatorSawhney, Sujata-
Autor(es): dc.creatorSchanberg, Laura E.-
Autor(es): dc.creatorvon Scheven, Emily-
Autor(es): dc.creatorScott, Christiaan-
Autor(es): dc.creatorSon, Mary Beth-
Autor(es): dc.creatorTony, Gladys-
Autor(es): dc.creatorWeitzman, Elissa R.-
Autor(es): dc.creatorWenderfer, Scott E.-
Autor(es): dc.creatorWoodside, Alisha-
Autor(es): dc.creatorLewandowski, Laura B.-
Autor(es): dc.creatorSmith, Eve MD-
Data de aceite: dc.date.accessioned2025-08-21T23:00:21Z-
Data de disponibilização: dc.date.available2025-08-21T23:00:21Z-
Data de envio: dc.date.issued2025-04-29-
Data de envio: dc.date.issued2025-01-31-
Fonte completa do material: dc.identifierhttp://dx.doi.org/10.1136/ard-2024-226528-
Fonte completa do material: dc.identifierhttps://hdl.handle.net/11449/302553-
Fonte: dc.identifier.urihttp://educapes.capes.gov.br/handle/11449/302553-
Descrição: dc.descriptionObjectives: Childhood-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. Methods: 21 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. Results: The 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. Conclusion: Standardised 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.-
Descrição: dc.descriptionDepartments of Medicine and Pediatrics Duke University School of Medicine-
Descrição: dc.descriptionDepartment of Pediatrics University of Colorado Anschutz Medical Campus-
Descrição: dc.descriptionService de Pediatrie Centre Hospitalier Universitaire de Lyon-
Descrição: dc.descriptionDepartment of Allergology Rheumatology and Clinical Immunology University Medical Centre-
Descrição: dc.descriptionDepartment of Clinical Immunology and Rheumatology Sanjay Gandhi Post Graduate Institute of Medical Sciences, Uttar Pradesh-
Descrição: dc.descriptionDepartment of Women's & Children's Health University of Liverpool-
Descrição: dc.descriptionDepartment of Paediatric Rheumatology Alder Hey Children's NHS Foundation Trust-
Descrição: dc.descriptionDepartment of Pediatrics Hospital for Special Surgery-
Descrição: dc.descriptionDepartments of Medicine and Pediatrics The Ohio State University College of Medicine-
Descrição: dc.descriptionTARGET LUPUS PPIE Group University of Liverpool-
Descrição: dc.descriptionDepartment of Pediatrics University of Cincinnati-
Descrição: dc.descriptionDepartment of Pediatrics Harvard Medical School-
Descrição: dc.descriptionCentre for Rheumatology University College London-
Descrição: dc.descriptionUniversity of Nevada Reno School of Social Work-
Descrição: dc.descriptionDepartment of Pediatrics Hofstra Northwell School of Medicine at Hofstra University-
Descrição: dc.descriptionDivision of Rheumatology Inflammation and Immunity Brigham and Women's Hospital-
Descrição: dc.descriptionThe University of Utah School of Medicine-
Descrição: dc.descriptionDivision of Rheumatology and Department of Pediatrics The Hospital for Sick Children-
Descrição: dc.descriptionDivision of Rheumatology University of Toronto Temerty Faculty of Medicine-
Descrição: dc.descriptionErasmus MC University Medical Center-
Descrição: dc.descriptionNIHR Great Ormond Street Hospital Biomedical Research Centre University College London-
Descrição: dc.descriptionInstitute of Child Health and Department of Paediatric Nephrology Great Ormond Street Hospital for Children NHS Foundation Trust-
Descrição: dc.descriptionDepartment of Pediatrics The Aga Khan University Medical College East Africa-
Descrição: dc.descriptionDepartment of Pediatrics Hacettepe University-
Descrição: dc.descriptionDepartment of Medicine Northwestern University Feinberg School of Medicine-
Descrição: dc.descriptionDirezione Scientifica IRCCS Istituto Giannina Gaslini and Dipartimento di Neuroscienze Riabilitazione Oftalmologia Genetica e Scienze Materno-Infantili Università degli Studi di Genova-
Descrição: dc.descriptionDepartments of Population Health Sciences and Pediatrics Duke University School of Medicine-
Descrição: dc.descriptionChildren's Hospital at Montefiore-
Descrição: dc.descriptionPediatric Rheumatology Division Faculdade de Medicina de Botucatu Universidade Estadual Paulista (UNESP)-
Descrição: dc.descriptionInstitute of Child Health Paediatric Rheumatology Division Sir Ganga Ram Hospital-
Descrição: dc.descriptionDepartment of Pediatrics Duke University School of Medicine-
Descrição: dc.descriptionDepartment of Pediatrics University of California San Francisco-
Descrição: dc.descriptionDepartment of Child and Adolescent Health University of Cape Town-
Descrição: dc.descriptionDivision of Pediatric Rheumatology University of Ottawa-
Descrição: dc.descriptionPatient/Caregiver Representative Childhood Arthritis and Rheumatology Research Alliance-
Descrição: dc.descriptionDepartment of Pediatrics The University of British Columbia-
Descrição: dc.descriptionBC Children's Hospital-
Descrição: dc.descriptionNational Institutes of Health National Institute of Arthritis and Musculoskeletal and Skin Diseases-
Descrição: dc.descriptionPediatric Rheumatology Division Faculdade de Medicina de Botucatu Universidade Estadual Paulista (UNESP)-
Formato: dc.format158-168-
Idioma: dc.languageen-
Relação: dc.relationAnnals of the Rheumatic Diseases-
???dc.source???: dc.sourceScopus-
Palavras-chave: dc.subjectChild-
Palavras-chave: dc.subjectHealth Care-
Palavras-chave: dc.subjectLupus Erythematosus-
Palavras-chave: dc.subjectLupus Nephritis-
Palavras-chave: dc.subjectOutcome Assessment-
Palavras-chave: dc.subjectPatient Reported Outcome Measures-
Palavras-chave: dc.subjectSystemic-
Título: dc.titleDevelopment of CARRA/PReS-endorsed consensus Core and Expanded Datasets in childhood-onset systemic lupus erythematosus for international registry-based research-
Tipo de arquivo: dc.typelivro digital-
Aparece nas coleções:Repositório Institucional - Unesp

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