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

24 Hour Marathon – Three Brothers Running for the Fourth
Toby, James & Alex take on an epic 24 hour marathon race to commemorate their brother Tristan
Read More
Centre for Appearance Research NF Survey - Results
Find out how you can take part in CAR's online survey about NF parenting and caring experiences.
Read More
Share your Covid-19 Story - Survey Results
Embracing Complexity share the results of their impact of Covid19 survey, find out more
Read More
Hour of Power – Love Yourself Valentine’s Day workout for NF
Thanks to all those that got their hearts pumping this Valentine's Day for our NF community!
Read More
Rare Disease Day 2021 and Rare Reach Festival
Find out how you can get involved in the first ever Rare Reach Festival and make sure the Rare communities voice is heard!
Read More
NF Said
Daisy takes on a 38-mile running challenge for her sister Millie, 1 mile a day for every person diagnosed with NF2 a year
Read More
Love Yourself - Hour of Power in Support of the NF community
Get your sweat on and spread the love this Valentine's day for our NF community!
Read More