Research for families

Yes, absolutely. Taking part in research is completely your and your child’s choice. You might receive information about relevant research, but there is never any pressure to take part. Your child’s care will not be affected by your decision. If you decide to take part and later change your mind, that’s okay - you can withdraw at any time.

It depends on the type of study. It could be as simple as filling in questionnaires, taking part in an interview or helping design new care pathways or equipment. For any study, you will always receive clear information and have time to ask questions or share concerns with our team before you decide.

There is no single answer for this. Some studies take just a few minutes online, while others need more time and involvement. It’s important to think about what works for you. Our research team will work flexibly to accommodate your needs, and remember, you can always change your mind and withdraw at any time.

Yes. If you take part in a research study, the research team will collect information as part of that particular study. Any information you share for a research study will be kept safe and confidential, just like your medical records.

Here’s what this means for you and your child:

• We will never tell anyone you or your child are in a study without asking you first.
• If your GP or doctor didn’t ask you or your child about joining, we will only let them know with your permission.
• When a study finishes, results may be shared at conferences or published, but your name and any details that could identify you or your child will never be included.
• You can also request to withdraw your or your child’s information at any time.