Development of Childhood Arthritis Rheumatology Research Alliance (CARRA)/Paediatric Rheumatology European Society (PReS)-endorsed consensus Core and Expanded Datasets in childhood-onset systemic lupus erythematosus for international registry-based research
Authors' 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.
Study context
- Population
- International cSLE experts and patients developing standardised datasets for registry-based childhood-onset SLE research21 experts · 4 patients
- Outcome
- Core and Expanded cSLE Datasets
Methodological detailsinternational, Delphi process, adapted nominal group technique, consensus defined as >80% agreement, endorsed by CARRA and PReS, Questionnaires, 2 topic-specific focus groups and 3 virtual consensus meetings
- International
- Delphi process
- Adapted nominal group technique
- Consensus defined as >80% agreement
- Endorsed by CARRA and PReS
- Questionnaires, 2 topic-specific focus groups and 3 virtual consensus meetings
Recommendations
As reported in the abstract
Core cSLE Dataset items (demographics, clinical features, laboratory results, medications, significant adverse events)
46
Expanded cSLE Dataset additional items (incl. patient-reported outcomes)
26
Original publication
Development of CARRA/PReS-endorsed consensus Core and Expanded Datasets in childhood-onset systemic lupus erythematosus for international registry-based research. Ann Rheum Dis. Published 2 January 2025. doi:10.
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