The Cleft Collective
Institution
University of Bristol
Area
How and why do scars form?
How do we prevent scarring?
How do we live with scarring?
Website
After funding the Cleft Collective for 10 years, the team continue with the support of the Underwood Trust and NIHR.
A cleft is the most common craniofacial abnormality (a problem to do with the skull and face) which babies are born with. 1 in 700 babies are born with a cleft and there are around 1100 new cleft births in the UK each year.
Clefts can significantly impact how babies feed, the development of speech, hearing, and appearance. Thankfully, there are robust systems in place to treat clefts and most people born with a cleft go on to live normal lives.
All children born with a cleft undergo at least one surgical procedure. This means that almost every child with a cleft will grow up with scar tissue in their mouth and on their lip. Some children scar well, but others scar badly. We wanted to find out why and learn more about what causes cleft in the first place.
What are the researchers doing?
In 2012, we established the Scar Free Foundation Cleft Gene Bank and Cohort Study, also known as the Cleft Collective. We wanted to answer three questions that families ask:
- What has caused my child’s cleft?
- What are the best treatments for my child?
- Will my child be okay (both now and in the long term?)
Hosted at the University of Bristol, this study collects genetic samples (saliva) from children with cleft and their parents. Our researchers ask questions about health, lifestyle, and demographics to learn more about the potential environmental causes of cleft.
The researchers also follow up with the families at key moments as the child grows up. All of this information is stored anonymously.
To date, over 10,000 people have taken part. This makes it one of the world’s largest biobanks.
Using this enormous dataset, researchers from all over the world can dig deeper into what causes cleft, what the best treatments are, and how a cleft affects development.
Some of the key areas that have studied using the Cleft Collective data are:
Although clefts are usually repaired within 1 year in the UK, 50% of children born with a cleft require Speech and Language Therapy. When problems with speech persist, there can be lifelong consequences.
Researchers in this study are collecting data on speech development using a system called Language Environment Analysis. When children in the study are 13 months old, they record how they vocalise and interact with their caregivers over the course of a single day. They also log information like their developmental milestones, and when they had surgery.
In combination with the genetic and lifestyle data collected by the main Cleft Collective study, this dataset is a powerful resource for researchers looking to understand how cleft affects language.
Having a baby born with a cleft can be an emotional time for families. Diagnosis, birth, feeding, and surgery are all stressful for parents. As the child grows older, they may also have problems with looking and sounding a little different from their peers.
While most people affected by cleft cope very well with these challenges, having the right support in place when it is needed is very important. The Psychology aspect of the Cleft Collective cohort studies aims to address one of the key questions that parents often ask: “Will my child be OK?”
By asking the parents and children in our study questions about their wellbeing, researchers hope to identify the key difficulties that families experience. With this information, they can improve the support that is available to anyone affected by cleft.
This project uses the genetic samples held in the Cleft Collective Gene Bank to look for genes that could cause cleft. They do this by comparing the DNA of babies born with cleft (from the Cleft Collective dataset) to the DNA of babies that aren’t born with cleft (from the Avon Longitudinal Study of Parents and Children.)
Generating data on the genetic make-up of cleft is crucial for our understanding of Scar Free healing. Learn how we’re using this data at our Programme for Wound Healing Research.
What difference will this research make?
What difference has already been made?
The Cleft Collective has had a massive impact on cleft research internationally.
From Oslo to Iowa, researchers are using the gene bank and questionnaire answers to direct their research. Over 67 peer-reviewed papers and 4 book chapters have been published so far. More and more scientists are getting involved every day – the number of requests to use the data has gone up every year since 2013.
The research published using Cleft Collective data is improving our understanding of cleft, and providing parents with reassurance and support about their child’s diagnosis.
The Future of the Cleft Collective
After funding the Cleft Collective for 10 years, the team continue with the support of the Underwood Trust and NIHR.
Get Involved
If you are a parent or a guardian of a baby or child with a cleft, you can get involved.
Researchers from any discipline can access the Collective’s impressive dataset by submitting a project proposal. The Cleft Collective’s website has all the information you need, including policies and examples of past project proposals.
Visit the Cleft Collective website using the links below for more information:
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