Active not recruitingOBSERVATIONAL

NeuralNET Cerebral Palsy Pilot Study

The NeuralNET Cerebral Palsy Pilot Study is exploring if a special genetic test, called whole-genome sequencing (WGS), could be used within the NHS for children with cerebral palsy (CP). It's thought that nearly a third of CP cases might be linked to changes in a child's genes. This study will use WGS to look for rare gene changes in children with CP and provide results to their doctors within 12 weeks. Finding a genetic cause could lead to more personalised care or treatment for a child. We also want to understand what families think about this testing. If this pilot study is successful, it could pave the way for a larger study and potentially make this type of testing available to more children with CP through the NHS.

At a glance

Status

Active not recruiting

Sponsor

University of Cambridge

Enrolment target

Start

14 Apr 2023

Estimated completion

31 Jan 2026

Cerebral Palsy

What is this study about?

The NeuralNET Cerebral Palsy Pilot Study is an important research project looking into a condition called cerebral palsy, or CP. CP affects movement and coordination, and for some children, the exact cause isn't fully understood. We know from other research that changes in a child's genes might be behind about one in three cases of CP. This study wants to see if using a special genetic test, called whole-genome sequencing (WGS), can help find these gene changes in children with CP within the NHS.

Imagine your body's instruction manual is made up of genes. WGS is like reading every single line of that manual to look for tiny spelling mistakes or changes that might explain why a child has CP. If a genetic cause is found, it could allow doctors to offer more specific care or treatment tailored to that child, potentially improving their health and wellbeing. The study will also help us understand how families feel about having this type of genetic testing.

This is a 'pilot' study, which means it's a first step. It's testing if it's practical to offer WGS to children with CP in the NHS. If it works well, it could lead to much larger studies and, eventually, make this advanced genetic testing available to more children in the future. The information gathered will also help scientists and doctors learn more about CP and find new ways to help children living with the condition.

Key takeaways

This study explores if genetic testing can help children with cerebral palsy (CP).
It uses a special test called whole-genome sequencing (WGS) to look for gene causes of CP.
Finding a genetic cause might lead to improved care or treatment for your child.
Participation involves a blood sample and answering some questionnaires.
The study helps us understand CP better and could make this testing available through the NHS in the future.
You can withdraw from the study at any time without affecting your child's NHS care.

Who may be eligible?

This study is looking for children who have a confirmed diagnosis of cerebral palsy (CP) by their doctor and don't already know the genetic cause of their CP. This means we're looking for children where the reason for their CP isn't yet understood from a genetic point of view. Children from any level of movement ability (called GMFCS score 1 to 5) can take part.

For a child to be included, their parent or legal guardian must be able to give permission and be willing to answer some questions for the study. Doctors from specific hospitals involved in the study will invite children and their families to participate.

We also need the child's biological parent or parents to take part, if they are available. Biological parents must be 18 years or older and willing to give their permission to join the study.

Quick self-check

Does your child have a confirmed diagnosis of cerebral palsy (CP)?
Has your child already had genetic testing that explained the cause of their CP? (If yes, you may not be eligible)
Are you, as the parent/guardian, willing to complete questionnaires and provide permission?
Are you (the biological parent) aged 18 or over and willing to give a blood sample?
Has your child been invited to participate by a doctor at one of the study hospitals?

This is a guide only — the research team will confirm whether you can take part.

What does participation involve?

If you decide to take part, the study will involve your child and their biological parent(s) (if available). The main thing you'll need to do is provide a small blood sample from everyone participating. This blood sample will be sent off for the specialist genetic test called whole-genome sequencing. We expect to get the results back to your child's doctor within 12 weeks.

As part of the study, parents or guardians will be asked to fill out two questionnaires. One will be before the genetic testing, and another after the results are received. Some parents or guardians will also be invited for a chat (interview) after they get the results, so we can understand their experience of the testing. The whole process, from start to finish, for each family is expected to take up to 16 months.

Potential risks and benefits

A potential benefit of taking part is that we might discover a genetic cause for your child's cerebral palsy. This information could lead to changes in their care or treatment that could improve their condition. It may also help us understand CP better in general. As with any blood test, there's a very small risk of bruising or discomfort, but serious risks are very rare. The information from the genetic test will be shared with your child’s doctor. You have the right to change your mind and withdraw from the study at any time, without it affecting your child's medical care.

Locations (1)

Cambridge University Hospitals NHS Trust
Cambridge, United Kingdom

Common questions

What is whole-genome sequencing (WGS)?

WGS is a detailed genetic test that looks at all of a person's genes to find subtle changes that might cause a health condition like CP.

How long will it take to get results?

The results of the genetic test are expected to be given to your child's doctor within 12 weeks.

Will taking part affect my child's current doctors?

No, your child's current medical care will not be affected if you choose to participate or not participating in the study.

What happens if a genetic cause is found for my child's CP?

If a genetic cause is identified, this information will be shared with your child’s doctor and could potentially lead to more tailored care or treatment options.

Will my child have to visit lots of times?

The main part of taking part involves providing a blood sample and filling in questionnaires. There are no frequent visits specifically for the study.