title: 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.
abstract: OBJECTIVE
  To engage young people, parent carers and clinicians in a systematic process to identify and prioritise research questions regarding ways to improve the health and well-being of children and young people with neurodisability.
  
  
  METHODS
  British Academy of Childhood Disability (BACD)-James Lind Alliance research priority setting partnership bringing together patients, carers and clinicians as equal stakeholders.
  
  
  METHODS
  UK health service and community.
  
  
  METHODS
  The BACD Strategic Research Group formed the partnership. A Steering Group was established; charity and professional partner organisations were recruited. Suggestions were gathered in an open survey and from research recommendations for statutory guidance. Items were aggregated to formulate indicative research questions and verified as uncertainties from research evidence. An interim survey was used to rank the questions to shortlist topics. A mixed group of stakeholders discussed the top 25 questions at the final priority setting workshop agreeing a final rank order and the top 10 research priorities.
  
  
  METHODS
  Partner organisations were 13 charities and 8 professional societies. 369 people submitted suggestions (40% non-clinicians). 76 people participated in the interim prioritisation (26 parents, 1 young person, 10 charity representatives, 39 clinicians); 22 took part in the final workshop (3 young people, 7 parents, 3 charity representatives, 9 professionals).
  
  
  RESULTS
  The top three research priorities related to (1) establishing the optimal frequency and intensity (dose) for mainstream therapies, (2) means for selecting and encouraging use of communication strategies and (3) ways to improve children's attitudes towards disability. The top 10 included evaluating interventions to promote mobility, self-efficacy, mental health, continence, physical fitness, educational inclusion and reduce impacts of sleep disturbance.
  
  
  CONCLUSIONS
  The methodology provided a systematic and transparent process to identify research priorities that included stakeholders that have typically not contributed to setting the research agenda. The top 10 and other topics identified provide a resource for researchers and agencies that fund research.
authors: PenCRU, University of Exeter Medical School, University of Exeter, Exeter, UK.
authors: Christopher
authors: C
authors: Morris
authors: Warwick Medical School, University of Warwick, Coventry, UK.
authors: Doug
authors: D
authors: Simkiss
authors: National Network of Parent Carer Forums, London, UK.
authors: Mary
authors: M
authors: Busk
authors: National Network of Parent Carer Forums, London, UK.
authors: Maureen
authors: M
authors: Morris
authors: Council for Disabled Children, National Children's Bureau, London, UK.
authors: Amanda
authors: A
authors: Allard
authors: Council for Disabled Children, National Children's Bureau, London, UK.
authors: Jacob
authors: J
authors: Denness
authors: PenCRU, University of Exeter Medical School, University of Exeter, Exeter, UK.
authors: Astrid
authors: A
authors: Janssens
authors: PenCRU, University of Exeter Medical School, University of Exeter, Exeter, UK.
authors: Anna
authors: A
authors: Stimson
authors: Addenbrookes Hospital NHS Trust, Cambridge, UK.
authors: Joanna
authors: J
authors: Coghill
authors: The British Academy of Childhood Disability, London, UK.
authors: Kelly
authors: K
authors: Robinson
authors: UK Database of Uncertainties about the Effects of Treatments (UK DUETs), National Institute for Health and Care Excellence, UK.
authors: Mark
authors: M
authors: Fenton
authors: The James Lind Alliance, NIHR Evaluation Trials and Studies Coordinating Centre, Southampton, UK.
authors: Katherine
authors: K
authors: Cowan
mesh_terms: D000047:Academies and Institutes; D000293:Adolescent; D035843:Biomedical Research / Q000458:organization & administration*; D002648:Child; D003299:Cooperative Behavior; D006233:Persons with Disabilities; D006292:Health Priorities; D006304:Health Status; D006801:Humans; D009422:Nervous System Diseases; D006113:United Kingdom; D055815:Young Adult
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