JLA childhood neurodisability research priorities – Top 10 published!

The James Lind Alliance

The James Lind Alliance

The James Lind Alliance (JLA) research priority setting partnership publishes its top 10 research questions that still need to be answered on the effectiveness of interventions for childhood neurodisability.

The aim of the James Lind Alliance 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 patient, carer and clinical perspectives.

Suggestions were gathered in an open survey, aggregated and framed as research questions, then checked against existing systematic reviews of research evidence to ensure they were unanswered. The topics were initially prioritised in a vote with stakeholders, and then discussed at a workshop by young people, parent carers and clinicians.

The final prioritisation workshop was held on 5 June 2014 at the Royal College of Paediatrics and Child Health in London. Participants in the workshop came from various regions of England.

There were three young adults with neurodisability, seven parent carers, three representatives from generic child disability charities (including Cerebra), a disability advisor in education, and eight health professionals (paediatrician, speech and language therapist, three physiotherapists, occupational therapist, nurse, orthopaedic surgeon). Three representatives from NIHR observed the meeting.

The group succeeded in prioritising the 25 uncertainties shortlisted from earlier stages, and a Top 10 was agreed. The Steering Group will meet again in September to review progress with our dissemination strategy.

To find out more about the work and all the topics considered and prioritised, please visit:

http://www.bacdis.org.uk/research/psp.htm