Related Experiment Video
Updated: Jul 4, 2025
Involving Individuals with Developmental Language Disorder and Their Parents/Carers in Research Priority Setting
Published on: June 6, 2020
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.
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.
