Investigator: Emma Southby, cleft lip and palate matron
Contact: Vania Oliveira and Amanpreet Banga, research nurses
t: 020 7188 7188 extension 52237.
Why is the study running/who is running the study?
The cleft study is run with our cleft lip and palate service. It looks at children born with cleft (split) lip or palate and aims to understand why it happens, how it affects the child’s life and how children with cleft can be better supported throughout their life.
What is it trying to achieve?
Cleft lip/palate is a congenital condition, which means that it is passed down (inherited) from the child’s parents.
Even though cleft is passed through a family, not everyone in the family will be born with a cleft lip or palate. In order to understand why this happens to some family members and not to others, the cleft study looks at the environment the family lives in and their DNA to see if there is any reason why some family members have cleft and some do not.
What does the study involve?
DNA is taken from saliva (spit), blood and tissue (muscle) samples from cleft children, their parents and their siblings.
What is the study's goal?
The study’s goal is to create a group (cohort) of children with cleft who can be followed until they reach 15 years of age so that we can build a better understanding of how having a cleft lip/palate effects their learning and development.
The study hopes to find a pattern (trend) that can be used to create better services and support for children born with cleft lip/palate
How can I get involved?
If you are interested in your child taking part in this research study as a patient, please speak to your doctor who will refer you to the appropriate study team.