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

Please provide your contact details below if you would like to receive updates and stay involved about the PSP.
Tick one or both boxes of what you would like to be kept informed about.

 



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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