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Metadados | Descrição | Idioma |
---|---|---|
Autor(es): dc.contributor | Duke University School of Medicine | - |
Autor(es): dc.contributor | University of Colorado Anschutz Medical Campus | - |
Autor(es): dc.contributor | Centre Hospitalier Universitaire de Lyon | - |
Autor(es): dc.contributor | University Medical Centre | - |
Autor(es): dc.contributor | Sanjay Gandhi Post Graduate Institute of Medical Sciences | - |
Autor(es): dc.contributor | University of Liverpool | - |
Autor(es): dc.contributor | Alder Hey Children's NHS Foundation Trust | - |
Autor(es): dc.contributor | Hospital for Special Surgery | - |
Autor(es): dc.contributor | The Ohio State University College of Medicine | - |
Autor(es): dc.contributor | University of Cincinnati | - |
Autor(es): dc.contributor | Harvard Medical School | - |
Autor(es): dc.contributor | University College London | - |
Autor(es): dc.contributor | University of Nevada Reno School of Social Work | - |
Autor(es): dc.contributor | Hofstra Northwell School of Medicine at Hofstra University | - |
Autor(es): dc.contributor | Brigham and Women's Hospital | - |
Autor(es): dc.contributor | The University of Utah School of Medicine | - |
Autor(es): dc.contributor | The Hospital for Sick Children | - |
Autor(es): dc.contributor | University of Toronto Temerty Faculty of Medicine | - |
Autor(es): dc.contributor | Erasmus MC University Medical Center | - |
Autor(es): dc.contributor | Great Ormond Street Hospital for Children NHS Foundation Trust | - |
Autor(es): dc.contributor | The Aga Khan University Medical College East Africa | - |
Autor(es): dc.contributor | Hacettepe University | - |
Autor(es): dc.contributor | Northwestern University Feinberg School of Medicine | - |
Autor(es): dc.contributor | Università degli Studi di Genova | - |
Autor(es): dc.contributor | Children's Hospital at Montefiore | - |
Autor(es): dc.contributor | Universidade Estadual Paulista (UNESP) | - |
Autor(es): dc.contributor | Sir Ganga Ram Hospital | - |
Autor(es): dc.contributor | University of California San Francisco | - |
Autor(es): dc.contributor | University of Cape Town | - |
Autor(es): dc.contributor | University of Ottawa | - |
Autor(es): dc.contributor | Childhood Arthritis and Rheumatology Research Alliance | - |
Autor(es): dc.contributor | The University of British Columbia | - |
Autor(es): dc.contributor | BC Children's Hospital | - |
Autor(es): dc.contributor | National Institute of Arthritis and Musculoskeletal and Skin Diseases | - |
Autor(es): dc.creator | Sadun, Rebecca E. | - |
Autor(es): dc.creator | Cooper, Jennifer C. | - |
Autor(es): dc.creator | Belot, Alexandre | - |
Autor(es): dc.creator | Avcin, Tadej | - |
Autor(es): dc.creator | Aggarwal, Amita | - |
Autor(es): dc.creator | Ainsworth, Jenny | - |
Autor(es): dc.creator | Akinsete, Alisha | - |
Autor(es): dc.creator | Ardoin, Stacy P. | - |
Autor(es): dc.creator | Beresford, Michael W. | - |
Autor(es): dc.creator | Bortey, Lynette | - |
Autor(es): dc.creator | Brunner, Hermine I. | - |
Autor(es): dc.creator | Chang, Joyce C. | - |
Autor(es): dc.creator | Ciurtin, Coziana | - |
Autor(es): dc.creator | Daftary, Ashley | - |
Autor(es): dc.creator | Eberhard, Barbara | - |
Autor(es): dc.creator | Feldman, Candace H. | - |
Autor(es): dc.creator | Hedrich, Christian M. | - |
Autor(es): dc.creator | Hersh, Aimee O. | - |
Autor(es): dc.creator | Hiraki, Linda T. | - |
Autor(es): dc.creator | Isenberg, David A. | - |
Autor(es): dc.creator | Kamphuis, Sylvia | - |
Autor(es): dc.creator | Knight, Andrea M. | - |
Autor(es): dc.creator | Lambert, Lou | - |
Autor(es): dc.creator | Levy, Deborah M. | - |
Autor(es): dc.creator | Marks, Stephen D. | - |
Autor(es): dc.creator | Maxwell, Naomi | - |
Autor(es): dc.creator | Migowa, Angela | - |
Autor(es): dc.creator | Moore, Katharine | - |
Autor(es): dc.creator | Ozen, Seza | - |
Autor(es): dc.creator | Ramsey-Goldman, Rosalind | - |
Autor(es): dc.creator | Ravelli, Angelo | - |
Autor(es): dc.creator | Reeve, Bryce B. | - |
Autor(es): dc.creator | Rubinstein, Tamar B. | - |
Autor(es): dc.creator | Saad-Magalhaes, Claudia | - |
Autor(es): dc.creator | Sawhney, Sujata | - |
Autor(es): dc.creator | Schanberg, Laura E. | - |
Autor(es): dc.creator | von Scheven, Emily | - |
Autor(es): dc.creator | Scott, Christiaan | - |
Autor(es): dc.creator | Son, Mary Beth | - |
Autor(es): dc.creator | Tony, Gladys | - |
Autor(es): dc.creator | Weitzman, Elissa R. | - |
Autor(es): dc.creator | Wenderfer, Scott E. | - |
Autor(es): dc.creator | Woodside, Alisha | - |
Autor(es): dc.creator | Lewandowski, Laura B. | - |
Autor(es): dc.creator | Smith, Eve MD | - |
Data de aceite: dc.date.accessioned | 2025-08-21T20:07:35Z | - |
Data de disponibilização: dc.date.available | 2025-08-21T20:07:35Z | - |
Data de envio: dc.date.issued | 2025-04-29 | - |
Data de envio: dc.date.issued | 2025-01-31 | - |
Fonte completa do material: dc.identifier | http://dx.doi.org/10.1136/ard-2024-226528 | - |
Fonte completa do material: dc.identifier | https://hdl.handle.net/11449/303553 | - |
Fonte: dc.identifier.uri | http://educapes.capes.gov.br/handle/11449/303553 | - |
Descrição: dc.description | Objectives: 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.description | Departments of Medicine and Pediatrics Duke University School of Medicine | - |
Descrição: dc.description | Department of Pediatrics University of Colorado Anschutz Medical Campus | - |
Descrição: dc.description | Service de Pediatrie Centre Hospitalier Universitaire de Lyon | - |
Descrição: dc.description | Department of Allergology Rheumatology and Clinical Immunology University Medical Centre | - |
Descrição: dc.description | Department of Clinical Immunology and Rheumatology Sanjay Gandhi Post Graduate Institute of Medical Sciences, Uttar Pradesh | - |
Descrição: dc.description | Department of Women's & Children's Health University of Liverpool | - |
Descrição: dc.description | Department of Paediatric Rheumatology Alder Hey Children's NHS Foundation Trust | - |
Descrição: dc.description | Department of Pediatrics Hospital for Special Surgery | - |
Descrição: dc.description | Departments of Medicine and Pediatrics The Ohio State University College of Medicine | - |
Descrição: dc.description | TARGET LUPUS PPIE Group University of Liverpool | - |
Descrição: dc.description | Department of Pediatrics University of Cincinnati | - |
Descrição: dc.description | Department of Pediatrics Harvard Medical School | - |
Descrição: dc.description | Centre for Rheumatology University College London | - |
Descrição: dc.description | University of Nevada Reno School of Social Work | - |
Descrição: dc.description | Department of Pediatrics Hofstra Northwell School of Medicine at Hofstra University | - |
Descrição: dc.description | Division of Rheumatology Inflammation and Immunity Brigham and Women's Hospital | - |
Descrição: dc.description | The University of Utah School of Medicine | - |
Descrição: dc.description | Division of Rheumatology and Department of Pediatrics The Hospital for Sick Children | - |
Descrição: dc.description | Division of Rheumatology University of Toronto Temerty Faculty of Medicine | - |
Descrição: dc.description | Erasmus MC University Medical Center | - |
Descrição: dc.description | NIHR Great Ormond Street Hospital Biomedical Research Centre University College London | - |
Descrição: dc.description | Institute of Child Health and Department of Paediatric Nephrology Great Ormond Street Hospital for Children NHS Foundation Trust | - |
Descrição: dc.description | Department of Pediatrics The Aga Khan University Medical College East Africa | - |
Descrição: dc.description | Department of Pediatrics Hacettepe University | - |
Descrição: dc.description | Department of Medicine Northwestern University Feinberg School of Medicine | - |
Descrição: dc.description | Direzione Scientifica IRCCS Istituto Giannina Gaslini and Dipartimento di Neuroscienze Riabilitazione Oftalmologia Genetica e Scienze Materno-Infantili Università degli Studi di Genova | - |
Descrição: dc.description | Departments of Population Health Sciences and Pediatrics Duke University School of Medicine | - |
Descrição: dc.description | Children's Hospital at Montefiore | - |
Descrição: dc.description | Pediatric Rheumatology Division Faculdade de Medicina de Botucatu Universidade Estadual Paulista (UNESP) | - |
Descrição: dc.description | Institute of Child Health Paediatric Rheumatology Division Sir Ganga Ram Hospital | - |
Descrição: dc.description | Department of Pediatrics Duke University School of Medicine | - |
Descrição: dc.description | Department of Pediatrics University of California San Francisco | - |
Descrição: dc.description | Department of Child and Adolescent Health University of Cape Town | - |
Descrição: dc.description | Division of Pediatric Rheumatology University of Ottawa | - |
Descrição: dc.description | Patient/Caregiver Representative Childhood Arthritis and Rheumatology Research Alliance | - |
Descrição: dc.description | Department of Pediatrics The University of British Columbia | - |
Descrição: dc.description | BC Children's Hospital | - |
Descrição: dc.description | National Institutes of Health National Institute of Arthritis and Musculoskeletal and Skin Diseases | - |
Descrição: dc.description | Pediatric Rheumatology Division Faculdade de Medicina de Botucatu Universidade Estadual Paulista (UNESP) | - |
Formato: dc.format | 158-168 | - |
Idioma: dc.language | en | - |
Relação: dc.relation | Annals of the Rheumatic Diseases | - |
???dc.source???: dc.source | Scopus | - |
Palavras-chave: dc.subject | Child | - |
Palavras-chave: dc.subject | Health Care | - |
Palavras-chave: dc.subject | Lupus Erythematosus | - |
Palavras-chave: dc.subject | Lupus Nephritis | - |
Palavras-chave: dc.subject | Outcome Assessment | - |
Palavras-chave: dc.subject | Patient Reported Outcome Measures | - |
Palavras-chave: dc.subject | Systemic | - |
Título: dc.title | Development of CARRA/PReS-endorsed consensus Core and Expanded Datasets in childhood-onset systemic lupus erythematosus for international registry-based research | - |
Tipo de arquivo: dc.type | livro digital | - |
Aparece nas coleções: | Repositório Institucional - Unesp |
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