Childhood Neurological Conditions Priority Setting Partnership
The British Paediatric Neurology Association (BPNA) and the James Lind Allaince (JLA) have come together to organise a Priority Setting Partnership on Childhood Neurological Conditions. This partnership aims to shape future research on these conditions by bringing together patients, their parents and carers and health care professionals to identify and prioritise unanswered questions around treatments, therapies or procedures to present to researchers and funders.
The Partnership is guided by a Steering Group made up of young people with experience of neurological conditions, parents, carers and health professionals. The first step in identifying unanswered questions is a survey that involves everyone with an interest in Childhood Neurological Conditions. These questions are then checked to see which are truly unanswered questions. These unanswred questions are then shared in a second survey to prioritise them. This is open for everyone with an interest to complete.
Following this, a day long workshop involving patients, parents and carers and health professionals, works to finalise a Top Ten list of unanswered questions. These questions are then promoted to research organisations to influence future research.
The PSP is planned to last 24 months running from October 2019 and ending in October 2021. We have postponed the launch of the survey to gather unanswered questions until September 2020 because of the Covid-19 situation. Postponement will help ensure we can hear from patients, carers and health professionals.
The James Lind Alliance (JLA) support the PSP as Advisers and neutral facilitators. Ensuring that the process is followed in a fair, transparent way, with equal input from patients, carers and clinicians and their representatives
The Childhood Neurological Conditions PSP is funded by BPNA
Please find an example list of childhood neurological conditions here
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TIMELINE
October 2019
Steering Group and Expert Panel formed alongside the James Lind Alliance
First meeting to start the PSP
November 2019 - January 2020
Agree a Protocol to be submitted to the JLA website
Contact stakeholders (Charities) to be involved in the PSP
Design a questionnaire which will be piloted
Refine questionnaire for official launch
September 2020 - November 2020
Launch survey and publically promote
December 2020 - March 2021
Filter survey replies and categotrise
Identify research recommendations
April 2021 - May 2021
Develop interim prioritisation survey
Pilot prioritisation survey
June 2021 - July 2021
Launch prioritisation survey and publically promote
Agree final shortlist of questions to take to workshop(s)
August 2021 - September 2021
Schedule date for final prioritisation workshop(s)
Recruit participants
Chair and facilitate with JLA
October 2021
Disseminate workshop(s). Finalise top 10 questions
Submission of full list of workshop questions in order of priority. Engagement summary and engagement summary and question verification form to the JLA for publication on the JLA website
Publish final PSP report
Terms of Reference - Childhood Neurological Conditions Priority Setting Partnership
Protocol - Childhood Neurological Conditions Priority Setting Partnership
