Parent/guardian consent form

Taking part:

• I confirm that I am the parent or legal guardian of the child named below and have the legal right to sign this consent form for them.
• I have read the relevant information sheets.
• I have had time to think about the information, ask questions and my questions have been answered.
• I agree for my child to join The NeuralNET Cerebral Palsy Pilot study.
• I understand that my child can stop being in the study whenever we want and we don’t have to give a reason. Leaving the study will not affect my child’s NHS care in any way.

Samples and analysis

• I agree for my child to give a small blood sample. It will be used to look at their DNA for this study. If the NHS already has a stored sample of my child’s DNA, some of it can be used for this study instead of my child giving a new blood sample. My child’s DNA will be looked at for changes in their genes that may have caused their cerebral palsy symptoms.
• I agree for my child’s DNA sample to be stored in the NHS lab. My child’s doctors may access the stored DNA sample for NHS genetic testing with proper consent if other genetic testing is needed in the future. The DNA may also be used anonymously in the future for other research studies to help more people, but only if a review board says it is ok. If my child dies, the stored samples would continue to be available for use in the study in perpetuity.

Data

• I agree to fill in the study questionnaires and I will have the option to have a chat about how I feel about the genetic testing and my child’s result
• I understand that the study researchers can look at my child’s NHS health records to help understand the genetic testing results.
• I agree that the study team can write down my child's information (name, when they were born, and their NHS number) and my contact information so that they can send the samples to the NHS lab for testing and they can contact me about the study.
• I agree that my child’s sample and information may be used anonymously in the future for other approved research studies to help more people, but only if a review board says it is ok.
• I agree that my child’s sample and information may be used anonymously in the future for other approved research studies to help more people, but only if a review board says it is ok.
• I agree that a description of my child’s health issues and a summary of their genetic findings can be shared with a database called DECIPHER, but only if my child has a genetic finding that is useful for other people to see. I agree that my child’s anonymized results from this study may be shared with other researchers through reports, publications, presentations, or other media. My child's identity will never be revealed.
• If I take part in the optional interview, I agree the researchers can record our chat (just the sound), and share anonymized quotes with other researchers through reports, publications, presentations, or other media. My child's identity and my identity will never be revealed.
• I agree that the study team can contact me in the future about new studies my child could join. Saying yes to being contacted does not mean my child has to join any future studies.

Results

• I give permission for the research team to share my child’s genetic test result with my child’s doctor. I agree that my child’s doctor can then share the genetic test result with me.
• I understand that there is a small chance of learning about non-paternity (that someone is not the birth father) or other family relationships that may be private (like adoption) from my child’s genetic test results from this study.