The successes and challenges of harmonising juvenile idiopathic arthritis (JIA) datasets to create a large-scale JIA data resource.

ABSTRACT:

Background

CLUSTER is a UK consortium focussed on precision medicine research in JIA/JIA-Uveitis. As part of this programme, a large-scale JIA data resource was created by harmonizing and pooling existing real-world studies. Here we present challenges and progress towards creation of this unique large JIA dataset.

Methods

Four real-world studies contributed data; two clinical datasets of JIA patients starting first-line methotrexate (MTX) or tumour necrosis factor inhibitors (TNFi) were created. Variables were selected based on a previously developed core dataset, and encrypted NHS numbers were used to identify children contributing similar data across multiple studies.

Results

Of 7013 records (from 5435 individuals), 2882 (1304 individuals) represented the same child

SUBMITTER: Lawson-Tovey S 

PROVIDER: S-EPMC10339614 | biostudies-literature | 2023 Jul

REPOSITORIES: biostudies-literature