This study also asks the birth parents (biological mums and dads) of children taking part in the study to also take part. Birth parents who wish to take part will be asked to sign a consent form to confirm that they agree to the following statements:
Taking part:
- I confirm that 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 to join The NeuralNet Cerebral Palsy Pilot Study
- I understand that I can stop being in the study whenever I want and I don't have to give a reason. Leaving the study will not affect my NHS care in any way.
Samples and analysis:
- I agree to give a small blood sample. It will be used to compare my DNA to my child’s DNA for this study to look for changes in their genes that may have caused their cerebral palsy.
- I agree for my DNA sample to be stored in the NHS lab. My 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 I die, the stored sample would continue to be available for use in the study in perpetuity.
Data:
- I agree that the study team can write down my information (name, when I was born, and my NHS number) and my contact information so that they can send my sample to the NHS lab for testing and to contact me about the study.
- I agree that my DNA code 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 parts of my DNA code may be shared anonymously with other researchers through reports, publications, presentations, or other media. My 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 anonymous quotes with other researchers through reports, publications, presentations, or other media. My identity will never be revealed.
- I agree that the study team can contact me in the future about new studies I could join. Saying yes to being contacted does not mean that I have to join any future studies.
Results:
- I understand that my child may get a result from this study that could affect me and/or other family members.
- 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 DNA test results from this study.