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James Lind Alliance Childhood Disability Research Priority Setting Partnership

The aim of the James Lind Alliance (JLA) Childhood Disability Research Priority Setting Partnership was to identify and prioritise unanswered questions about the effectiveness of interventions for children and young people with neurodisability from both families’ and clinicians’ perspectives.

PenCRU managed this initiative on behalf of the British Academy of Childhood Disability (BACD). The Steering Group included representatives from the National Network of Parent Carer Forums, the Council for Disabled Children, the UK Database of Uncertainties about the Effects of Treatments (UK DUETs), Universities of Exeter and Warwick and the BACD and was chaired by an advisor from the JLA.

Suggestions were gathered in an open UK survey, aggregated and framed as research questions, then checked against existing systematic reviews of research evidence to ensure they were not already answered by research. The topics were initially prioritised in an online vote, and then debated at a workshop by young people, parent carers and clinicians.

The Top 10 represents the ‘shared priority’ topics selected by participants at the workshop. We have also made available the topics ranked 11-25 and all the issues identified in the survey.

The study has had a major impact on health research funding in the UK.

NIHR featured the project as an exemplar of Adding Value In Research Pillar 1: Identifying Important Research Topics.

Find out more about the James Lind Alliance.

Morris, C., Simkiss, D., Busk, M., Morris, M., Allard, A., Denness, J., Janssens, A., Stimson, A., Coghill, J., Robinson, K., et al (2015). Setting research priorities to improve the health of children and young people with neurodisability: a British Academy of Childhood Disability-James Lind Alliance Research Priority Setting Partnership.

We have also produced a plain language summary written by the steering group.