Read the research ‘participant information sheets (PIS)’ together (there is usually a version for parents/carers and a version for the child / young person). Do you understand it? Make a note of any questions you have.
Read these 'Welcome to Research for Children and Young People at Moorfields' webpages to help you know what to expect and prepare.
Have someone with ‘parental responsibility’ available to accompany your child to their visit. If this is difficult, please contact your study coordinator to discuss.
If you or your child need help because; English is not your first language, or because of a disability, or any other communication needs or impairments, please tell your study coordinator in advance so we can arrange a plan for appropriate support.
Speak with your study coordinator to find out how long your visit might last, so you can think about planning your journey and logistics. For example, you might want to think about school collection for siblings, or other caring duties you may have – just in case the visit takes longer than planned for any reason.
Help your child to have a good night’s sleep the night before their visit. If you are travelling a very long way to the hospital, it might be worth considering staying locally the night before, so your child is able to cope with the study assessments. Sometimes accommodation expenses can be reimbursed for research visits – please ask your coordinator if you think this is worth considering, before you make any bookings. They can confirm which expenses can be reimbursed.
What to bring:
A list of any general medical and eye or vision conditions your child has had, plus dates of when they started, or ended, or if ongoing
A list of any medications your child has taken, or is taking, plus dates of when they started and stopped them, and why
Any study equipment or medication or paperwork you have been given and asked to bring back to visits. For example, medication and packaging, diaries, knowledge of how the research treatment is going at home.
Your questions about the research
Your child’s glasses
Your child’s sunglasses – these may be useful if your child has dilating eye drops at their visit (see more about dilating eye drops)
Your child’s comfort items or toys or games to help relax and not feel too bored if there is waiting time
Charged electrical games / devices you might want to use (+ power bank)
Snacks to keep energy up (maybe lunch – see FAQs)
Water bottle (we have water stations around the hospital)
Any receipts for your travel, or food, or accommodation. Please check with your study coordinator what expenses can be reimbursed for your child’s research visits.
What NOT to bring:
Please do not bring other siblings. We do not have staff available to look after extra children and having siblings in the examination rooms can disrupt assessments, potentially leading to inaccurate measurements. Please speak to your study coordinator if this is going to be very difficult for you, or you need to discuss any logistical issues you have with bringing your child to appointments; then we can help accommodate your needs.
Please do not to bring your work with you. We need the parent / carer bringing the child to be engaged in the visit.
Growing up
Sometimes research lasts for a few years. When you come for your visits you will be growing older all the time. We are keen to support you and change how we look after you to suit your changing needs. Tell us how you prefer we talk to you or work with you as you grow older.