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

CAR research family planning decision making
This CAR UWE research explores family planning & decision making for people with a visible difference which can be inherited
Read More_skyline_370x280_800_600_s_c1.jpg)
Shine A Light 2024
The Shine A Light 2024 campaign had 133 buildings around the UK & the Republic of Ireland lit up in blue!
Read More
Guidance on sudden hearing loss in NF2-related Schwannomatosis (NF2-SWN)
Symptoms, diagnosis & treatment of sudden hearing loss, from Juliette Buttimore, Nurse Practitioner NF2 Service Addenbrooke's
Read More
NF2 Day 2024 by Emily Owen
A reflective poem for World NF2 Day, to celebrate people living with NF2
Read More
Connor’s NF2 story
Connor's mum Tracy's maternal instincts proved invaluable when fighting to get Connor's symptoms investigated
Read More
Jo’s Shine A Light Family Fun Day
The family fundraiser was supported by Dr Shruti Garg, member of the Nerve Tumours UK Medical Advisory Board
Read More
Erin’s 24 hour charity live stream
Erin has NF1 and is raising awareness with a 24 hour live charity stream to Shine A Light on NF
Read More_370x280_800_600_s_c1.jpg)
Tate’s Shine A Light Bikeathon
Tate's 4th NTUK fundraiser was a Shine A Light Bikeathon, having learnt to cycle in just 3 weeks!
Read More
Access to your GP
We want to hear from you… Help us improve services by completing a quick survey
Read More