Last year, we publicised two surveys from the British Paediatric Neurology Association (BPNA) and the James Lind Alliance (JLA). The aim of these surveys was to identify research priorities for people living with childhood neurological conditions, and their families and carers. The results of these surveys have now been published.
The BPNA and JLA asked people aged 25 and under living with a neurological condition, parents, and healthcare professionals to identify unanswered questions that they have regarding intervention and treatment for neurological conditions. Over 700 people responded to the first survey. The unanswered questions were narrowed down to 44 research questions. In a second survey, participants were asked to select their top 10 questions from the list of 44. Finally, the results of the second survey were discussed in a face-to-face workshop.
The BPNA and JLA have now identified the top 10 UK research priorities for interventions in childhood neurological conditions. Some of the selected priorities are relevant for children and young people with ataxia. These questions will now be promoted to research organisations to influence future research, to ensure that research into childhood neurological conditions addresses the unanswered questions of those living with the condition, their families and healthcare professionals.
You can see the top 10 UK priorities, and read more about the results here.
Thank you to everyone affected by ataxia that took part in these surveys.