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The study found agreement between young people, parents and professional regarding the most important health outcomes regarding neurodisability for identification through patient-reported outcome measures (PROMs). A systematic review and focus groups were used to examine the effectiveness of PROMs for measuring the specified outcomes, but found that none of the candidate PROMs in the review adequately captured all of these; in addition, there is inadequate evidence that candidate PROMs are psychometrically robust for use with children with neurodisability. Further research is needed to test potential PROMs for use across this population.

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Christopher Morris,1,* Astrid Janssens,1 Amanda Allard,2 Joanne Thompson Coon,1 Valerie Shilling,1 Richard Tomlinson,3 Jane Williams,4 Andrew Fellowes,2 Morwenna Rogers,1 Karen Allen,1 Bryony Beresford,5 Colin Green,1 Crispin Jenkinson,6 Alan Tennant,7 Stuart Logan,1 

1 University of Exeter Medical School, University of Exeter, Exeter, UK
2 Council for Disabled Children, National Children’s Bureau, London, UK
3 Department of Child Health, Royal Devon and Exeter NHS Foundation Trust, Exeter, UK
4 Department of Child Health and Paediatrics, Nottingham Children’s Hospital, Nottingham University Hospitals NHS Trust, Nottingham, UK
5 Social Policy Research Unit, University of York, York, UK
6 Department of Public Health, University of Oxford, Oxford, UK
7 Department of Rehabilitation Medicine, University of Leeds, Leeds, UK
* Corresponding author ; Email:

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https://dx.doi.org/{{metadata.DOI}}

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