CAPTURE JIA
Research type
Research Study
Full title
CAPTURE JIA: Achieving Uniform and Optimal Data Collection to Improve Patient Care for Children and Young People with JIA
IRAS ID
212656
Contact name
Flora McErlane
Contact email
Sponsor organisation
NUTH
Duration of Study in the UK
1 years, 9 months, 0 days
Research summary
There is growing recognition within paediatric rheumatology (PRh) that a clinically feasible, pragmatic and agreed standardized ‘core dataset’ for juvenile idiopathic arthritis (JIA) is important; it would enable uniform and meaningful clinical data collection to address the needs of many stakeholders (informing clinical practice and research, benchmarking service delivery, improving accuracy of feasibility studies for research and facilitating recruitment to clinical trials). However, to date there is no consensus on the collection of data items in routine clinical practice (2014 multicentre audit of real world clinical data, McErlane et al).
In response, this group has led the development of a standardised core dataset called CAPTURE-JIA (Consensus derived, Accessible (information), Patient-focused, Team-focused, Universally collected (UK), Relevant to all and containing Essential data items). CAPTURE-JIA has been developed by community consensus to be maximally useful to all stakeholders, containing clinician-derived and patient-derived data items considered essential by families, clinicians, researchers, NHS providers and commissioners.
The feasibility and utility of CAPTURE-JIA in clinical practice is not yet known and is the focus of this pilot study. Our aims are to develop, pilot and test a Microsoft Word proforma to collect CAPTURE-JIA data items in ‘real world’ clinical practice, ensuring that CAPTURE-JIA is ready for adoption nationwide. We envisage that our proposed qualitative approach, including stakeholder-led proforma modification, will enable stakeholder engagement (‘buy in’), and will inform guidance on use of CAPTURE-JIA in the clinical setting.
The CAPTURE-JIA dataset and the availability of a tested and agreed Microsoft Word data collection proforma will greatly enhance the utility of data collated by, and for clinicians, service providers, researchers, managers, commissioners and patients/ families. The CAPTURE-JIA dataset will foster collaborative and effective working, benchmarking of clinical services against quality indicators, and aligning treatment strategies and clinical research opportunities, with the aim of improving clinical care for CYP with JIA in the UK.
REC name
East Midlands - Leicester Central Research Ethics Committee
REC reference
16/EM/0470
Date of REC Opinion
8 Nov 2016
REC opinion
Favourable Opinion