You do not have to take part in this study and if you decide not to take part, this will not affect any healthcare you or your child/ren receive. If you decide you would like to take part, but change your mind later, you can withdraw from the study at any time. If you begin the study and later decide to stop, you may be asked if it would be possible to keep in contact with us to let us know how you and your baby are doing. If you withdraw from the study, we would only keep any data we have collected from you with your continued permission.
What happens after the study finishes?
The study is for a set time period and will finish when your child reaches the age of 18 months. Once the study finishes, if you feel you would like further support, we would be happy to discuss other possible options with you.
What are the possible benefits of taking part?
When participating in this study, you will receive additional visits to those already provided by your local NHS Specialist Cleft team. Also, at the last assessment you will be given a DVD of you and your baby playing together for you to keep. By participating in the study we hope to contribute to the development of the future care of families who find themselves in a similar situation to yours.
What are the possible disadvantages of taking part?
You will need to put aside about an hour and a half for each visit. These will be in your home, or other location if you choose, and arranged a time most convenient for you and your family. The final assessment visit, when your baby is 18 months, will take place in Reading (all travel costs will be covered).
REC Ref: 12/SC/0626 (NRES Committee-Oxford C) Copyright © All Rights Reserved