The NeuralNET Cerebral Palsy Pilot Study
Research type
Research Study
Full title
The NeuralNET: Research to impact diagnosis, mechanistic understanding and treatment of children's brain and mental health disorders – A pilot study in cerebral palsy
IRAS ID
319781
Contact name
Stephen Kelleher
Contact email
Sponsor organisation
Cambridge University Hospitals NHS Foundation Trust and the University of Cambridge
Duration of Study in the UK
1 years, 10 months, 1 days
Research summary
The NeuralNET Cerebral Palsy Pilot Study is testing a genetic testing pathway in the NHS for children with cerebral palsy (CP). Other studies suggest that almost one in three peoples’ CP is caused by a change in their genes, but more studies are needed to confirm this. A genetic test called whole genome sequencing (WGS) will be used for children who have CP to look for rare changes in genes that cause the condition, and the results of the test will be given to children’s doctors within 12 weeks. Knowing that CP has a genetic cause could lead to changes being made to a child’s care or treatment that could improve their condition.
The study will test 66 children with CP from 3 hospitals, and also their biological parent(s), if they’re available. Following informed consent, we will collect a blood sample from everyone taking part which will be sent for WGS. It is important to understand what families think and feel about the testing. We will ask parents/guardians of the children taking part to fill in two questionnaires, one before and one after WGS. Some parents/guardians will also be interviewed after getting the WGS result, to ask about their experience of the testing. The study will take up to 16 months per family.
The results of this pilot study will tell us if it is feasible for the NHS to use WGS to test children with CP. If so, a larger study testing more children with CP can then be carried out to help decide if this type of WGS-based testing should be made available through the NHS to children with CP whose clinical care might be changed by the result. The genetic findings from this study will also be made available to other researchers and doctors to do more research into CP that might help us better understand and treat the condition.REC name
Wales REC 5
REC reference
23/WA/0012
Date of REC Opinion
14 Feb 2023
REC opinion
Further Information Favourable Opinion