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

Artificial Intelligence & Disability Recruitment
Creating fair processes for people with disabilities by the HR teams that are using artificial intelligence/face recognition
Read More
It’s a Kind of Magic
Mike Brennan has had to deal with the stigma as well as the symptoms of NF1, which he has battled since he was a young child.
Read More
Centre for Appearance Research (CAR) and The VTCT Foundation Virtual Showcase 28th July 2020
Get the latest updates on the Centre for Appearance Research's work into helping people with Visible Difference
Read More
Specialist Neurofibromatosis Nurse - Wales
Find out more about our latest position available in Wales
Read More
Covid-19 Impact on Wellbeing in Families of Children with Rare Neurogenetic Disorders (CoIN Study)
Find out how you can get involved
Read More
Julie Ann Evans
Learn how to navigate the benefits system for people with NF & how to approach Personal Independence Payments (PIP)
Read More
Katie’s Story
Read Katie's inspirational NF Story & how she uses running to overcome her problems
Read More
#OneMoreNurse
We need your help to continue our Specialist Neurofibromatosis Support Network
Read More
NF1 Army’s incredible 10 million steps fundraiser!
read about team 10 million steps fantastic lockdown fundraising efforts
Read More