title: Priority setting partnership to identify the top 10 research priorities for the management of Parkinson's disease.
abstract: OBJECTIVE
  This priority setting partnership was commissioned by Parkinson's UK to encourage people with direct and personal experience of the condition to work together to identify and prioritise the top 10 evidential uncertainties that impact on everyday clinical practice for the management of Parkinson's disease (PD).
  
  
  METHODS
  The UK.
  
  
  METHODS
  Anyone with experience of PD including: people with Parkinson's (PwP), carers, family and friends, healthcare and social care professionals. Non-clinical researchers and employees of pharmaceutical or medical devices companies were excluded. 1000 participants (60% PwP) provided ideas on research uncertainties, 475 (72% PwP) initially prioritised them and 27 (37% PwP) stakeholders agreed a final top 10.
  
  
  METHODS
  Using a modified nominal group technique, participants were surveyed to identify what issues for the management of PD needed research. Unique research questions unanswered by current evidence were identified and participants were asked to identify their top 10 research priorities from this list. The top 26 uncertainties were presented to a consensus meeting with key stakeholders to agree the top 10 research priorities.
  
  
  RESULTS
  1000 participants provided 4100 responses, which contained 94 unique unanswered research questions that were initially prioritised by 475 participants. A consensus meeting with 27 stakeholders agreed the top 10 research priorities. The overarching research aspiration was an effective cure for PD. The top 10 research priorities for PD management included the need to address motor symptoms (balance and falls, and fine motor control), non-motor symptoms (sleep and urinary dysfunction), mental health issues (stress and anxiety, dementia and mild cognitive impairments), side effects of medications (dyskinesia) and the need to develop interventions specific to the phenotypes of PD and better monitoring methods.
  
  
  CONCLUSIONS
  These research priorities identify crucial gaps in the existing evidence to address everyday practicalities in the management of the complexities of PD.
authors.affiliation: School of Health Sciences, University of East Anglia, Norwich, UK.
authors.forename: Katherine H O
authors.initials: KH
authors.lastname: Deane
authors.affiliation: School of Health Sciences, University of East Anglia, Norwich, UK.
authors.forename: Helen
authors.initials: H
authors.lastname: Flaherty
authors.affiliation: School of Health Sciences, University of East Anglia, Norwich, UK.
authors.forename: David J
authors.initials: DJ
authors.lastname: Daley
authors.affiliation: School of Health Sciences, University of East Anglia, Norwich, UK.
authors.forename: Roland
authors.initials: R
authors.lastname: Pascoe
authors.affiliation: School of Health Sciences, University of East Anglia, Norwich, UK.
authors.forename: Bridget
authors.initials: B
authors.lastname: Penhale
authors.affiliation: School of Clinical and Experimental Medicine, College of Medical and Dental Sciences, University of Birmingham, Birmingham, UK Department of Neurology, Sandwell and West Birmingham Hospitals NHS Trust, City Hospital, Birmingham, UK.
authors.forename: Carl E
authors.initials: CE
authors.lastname: Clarke
authors.affiliation: Kings College, London, UK.
authors.forename: Catherine
authors.initials: C
authors.lastname: Sackley
authors.affiliation: Parkinson's UK, London, UK.
authors.forename: Stacey
authors.initials: S
authors.lastname: Storey
mesh_terms: D017028:Caregivers; D032921:Consensus; D003625:Data Collection; D003695:Delivery of Health Care; D019468:Disease Management; D005190:Family; D033062:Friends; D006282:Health Personnel; D006292:Health Priorities; D006301:Health Services Needs and Demand; D006801:Humans; D010300:Parkinson Disease / Q000150:complications / Q000628:therapy*; D010361:Patients; D012106:Research; D006113:United Kingdom
keywords: Disease management; Priority setting partnership; Research priorities