Childhood Neurological Conditions Priority Setting Partnership
The final workshop to identify the Top Ten unanswered questions in Childhood Neurological Conditions to influence future research priorities happened on 30 March 2022.
Here are the Top Ten UK research priorities for interventions in childhood neurological disorders.
Accompanying the Top Ten below is a detailed downloadable document to read.
CLICK HERE TO DOWNLOAD
This includes the 16 other research priorities and goes into more details about the final top 10 by people with an interest on each question and why it matters as a priority.
The Childhood Neurological Disorders Priority Setting Partnership (PSP) would not have been possible without the individuals, families, care partners, charities and professionals who participated in the surveys and final workshop. We thank them for lending their time and voices.
Please see more information about our Priority Setting Partnership on Childhood Neurological Conditions and the Timeline below.
The British Paediatric Neurology Association (BPNA) and the James Lind Alliance (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 was a survey completed by everyone with an interest in Childhood Neurological Conditions. These questions were then checked to see which are truly unanswered questions. The unanswered questions were then shared in a second survey with the aim of prioritising them. This was open for everyone with an interest to complete. Following this, a day long workshop was held to finalise a Top Ten list of unanswered questions and involved patients, parents and carers and health professionals. These questions are then promoted to research organisations to influence future research.
The PSP was planned to last 24 months running from October 2019 and ending in October 2021. The launch of the survey to gather unanswered questions was postponed until September 2020 due to Covid-19, with the aim of ensuring we hear from as many patients, carers and health professionals as possible.
The project completed on 30 November 2022 when the results were published.
Please find an example list of childhood neurological conditions here.
If you would like to promote the survey via social media, the accounts that are used during this time to tag or reference us are: Twitter @BPNA_org & Instagram @childneuroconditionssurvey #ChildNeuroConditionsPSP
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 the BPNA.
For any questions please contact firstname.lastname@example.org
For Terms of Reference and Protocol please scroll to the bottom of the page.