The NeuralNET is a research study looking for rare genetic changes in a child’s DNA which can cause neurological disorders such as cerebral palsy.
The NeuralNET Cerebral Palsy Pilot Study aims to build a genetic testing pathway in the NHS for children with cerebral palsy and other neurological disorders. The findings from the genetic testing will be given to doctors and used for research into cerebral palsy that may help us better understand and treat the disorder.
It is important to understand what families think and feel about the testing. That is why this NeuralNET study is asking families who have genetic testing to provide feedback.
Other research studies suggest that almost one in three people with cerebral palsy may have a genetic cause for their diagnosis, but further studies are needed to confirm this.
In this study, we will use the latest type of laboratory test (whole genome sequencing)to look for changes in the genes that can cause cerebral palsy.
Some children will not have a genetic cause for their cerebral palsy, and others may have a genetic cause that cannot be detected with the testing that is currently available.
Who can take part in the study?
Children with cerebral palsy being seen in neurology/specialist clinics who are invited by their doctor.
What will the study involve?
A blood test for all family members including the child and biological parent(s), if available.
The DNA from the blood samples will be sent for whole genome sequencing and we will look for any genetic changes.
We will also ask a parent/ guardian to complete two questionnaires and having a short interview about what they think and feel about the testing.
Will we get any results?
Yes. We hope to get results back to doctors and families within three months (12 weeks) of the blood test.
Did you know?
In every cell in your body there is DNA, the information that helps determine how your body looks and works.
The information is divided up into individual sets of instructions called genes.
Sometimes there is an unexpected change in a gene, and that genetic change can cause a difference in how the body works.
A genetic test looks for unexpected changes in a person’s genes.
Study team contact details
The NeuralNET study team:
- NeuralNET email cuh.neuralnetstudy@nhs.net
- NeuralNET phone 01223 768614
Co-ordination / Genetic counselling
- Emily Li
- Heather Pierce
Consultants:
Chief Investigator: Prof David Rowitch (Paediatrics) Cambridge University Hospitals
Principal investigators:
- Dr Alison Sansome (Community Paediatrics) Cambridge
- Dr Ben Marlow & Dr ManalIssa (Paediatrics) Colchester
- Dr Anna Basu & Dr Yasmin de Alwis (Paediatrics) Newcastle
If you would like to find out more about the study, please contact the NeuralNET team. We are happy to answer your questions, and there is no obligation to take part! We look forward to hearing from you.
This patient information leaflet - IRAS 319781_NeuralNET CP Pilot Study Parent/guardian PIS_v2.0_27.01.2023 - has been converted to a web page.