Childhood Neurological Conditions Survey Part 2
08 December 2021
The British Paediatric Neurology Association and James Lind Alliance have launched a survey to define the Top 10 unanswered questions about the treatment of childhood neurological conditions, where there is uncertainty about the effectiveness of treatments.
We contacted you last year to support us in our first Priority Setting Partnership survey. More can be found on our web page here.
We have refined those questions and are now launching our second survey. From a list of 44 questions, please choose the top 10 most important to you.
We would like to invite you to help us ensure that the survey and workshops we carry out following the outcomes involve those whose lives are affected by these conditions and the clinicians who treat them. Your previous support was invaluable.
This partnership with the community is important - we know that this process is effective in finding research priorities. Recent priority areas have received millions of pounds of additional research funding.
For more information about the Priority Setting Partnership please visit our website which sets out our objectives and who is involved in our Steering Group. Weblink here.
Following the end of this survey, a priority-setting workshop is convened where participants, representing patients, carers and clinicians, discuss and finally arrive at a Top 10 list of research priorities.
The eventual aim is to turn these priorities into funded research questions that have the potential to go on to improve the lives of children with Neurofibromatosis and other neurological conditions.
If you are interested in taking part in this survey click the button below:
Website:
https://bpna.org.uk/?page=childhood-neurology-priority-setting-project
Contact:
info@bpna.org.uk
Survey closes:
31 January 2022
Nerve Tumours UK is not responsible for any data collection or content of the research.
Filter News

Jo’s 160 Mile walk for NTUK!
Read Jo's Story as she prepares to take on a 160 mile epic walking challenge for Nerve Tumours UK.
Read More
NF2 & Identity Research Study
If you have NF2, Suzi want's to hear from you! Find out more about her research study relating identity & NF2
Read More
Challenge 100 – Everyone’s invited
Take on 100 of anything you can think of and fundraise to support our NF community!
Read More
A very “Happy Easter” to you all!
A message from Karen, our Charity Director, wishing you all a very Happy Easter!
Read More
Stuart & William’s Story: Turning blue for World NF Month
Check out Stuart & William's creative fundraiser for World Neurofibromatosis Awareness Month
Read More
Coordinated Care of Rare Diseases Study at UCL
Find out the results to the Coordinated Care of Rare Diseases Study at UCL
Read More
Who is exempt from wearing a face mask? UK exemptions rules explained - and how to get a hidden disabilities exemption
Find out the up to date information on face mask rules in your area
Read More
Carers Rights Day. Diane’s Story
Find out more about Diane's life as a carer and how more should be done for unpaid carers in the UK
Read More
NF1 PN Impact on Patients’ and Caregivers’ Lives
If you have NF1 with plexiform neurofibromas or you care for someone with NF1 PN help shape future healthcare support
Read More