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Research priority setting for paediatric rheumatology in the UK
Eve M D Smith1, Naomi Egbivwie1, Katherine Cowan2
1Department of Women's & Children's Health, Institute of Life Course and Medical Sciences, University of Liverpool, UK; Department of Paediatric Rheumatology, Alder Hey Children's NHS Foundation Trust Hospital, Liverpool, UK.
Insights
Research priorities for paediatric rheumatic diseases were identified through a consensus process involving healthcare professionals and patients. This aims to address the lack of evidence and guide future research funding for unmet patient needs.
Area of Science:
- Paediatric Rheumatology
- Health Policy
- Clinical Research
Background:
- The management of paediatric rheumatic diseases suffers from a deficient evidence base.
- Numerous critical questions remain unanswered in this field.
Purpose of the Study:
- To elicit and prioritize research needs in paediatric rheumatic diseases.
- To guide clinicians, academics, and funding bodies in prioritizing research efforts.
Main Methods:
- A modified Delphi process was employed, including online surveys and a consensus workshop.
- Input was gathered from paediatric rheumatologists, allied health professionals, patients, and carers.
- A longlist of 55 disease-specific and 37 general research priorities was initially compiled.
Main Results:
- A list of 11 top general research priorities was established.
- The top ten disease-specific research priorities were finalized through in-depth discussion at a workshop.
Conclusions:
- This study identified key research priorities to address unmet needs in paediatric rheumatic diseases.
- The findings will inform strategic planning for research and funding in the field.
Abstract:
The evidence base that underlies the management of children and young people with paediatric rheumatic diseases is deficient. In this field, there are many crucial unanswered questions. The UK Paediatric Rheumatology Clinical Studies Group, supported by UK National Institute for Health Research Clinical Research Network: children and Versus Arthritis, elicited ideas for research priorities from paediatric rheumatologists, trainees, allied health-care professionals, nurse specialists, patients, parents of patients, carers, and charities. These ideas were collected through online surveys and face-to-face meetings. A modified Delphi process was used, which included online research priority ranking surveys and a consensus workshop. A longlist of 55 disease-specific research priorities and 37 general research priorities were voted on in the first survey. A list of 11 top general research priorities was produced. The top ten disease-specific research priorities were discussed in depth at a Delphi workshop to determine their final ranking. This Health Policy paper will help to guide clinicians, academics, and funding bodies to prioritise research in paediatric rheumatic diseases, specifically in areas of unmet patient needs.
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