CLAPA runs regular surveys of our community so we can make sure everything we do is based on the needs of people in the UK affected by cleft lip and/or palate.

Here you can find information on some of our past surveys, including reports on the results.

You are free to use these statistics for academic or media purposes. Contact CLAPA for more information, or see our Press & Media page.

Annual Surveys

CLAPA’s Annual Surveys take place in September each year and provide a ‘snapshot’ of the UK cleft community’s concerns, attitudes and needs.




Adults’ ‘Whole of Life’ Survey

CLAPA’s ‘Whole of Life’ Survey was a large-scale survey of adults in the UK born with a cleft. It’s findings have fed into several research papers and continue to influence our work with adults born with a cleft. More information.

Research Summary: Treatment Decision Making in Adults with Cleft

Research Summary: Interpersonal Relationships in Adults with Cleft

Research Summary: Emotional Wellbeing in Adults Born with a Cleft

Diagnosis – 2016-17

This survey looked at parents’ and carers’ experiences of diagnosis. This survey has now closed with over 1,200 responses.

Scientific Papers

Parental views of antenatal testing and termination following a diagnosis of cleft lip

This study looked at parents’ reactions to being offered a termination after diagnosis, and how this might have affected their view of their child’s cleft and their experiences of diagnosis in general.

Read Paper

Breaking the News: Parents’ Experiences of Receiving an Antenatal Diagnosis of Cleft Lip

This study took a broad look at parents’ experiences of antenatal diagnosis to see if there were any practical ways this process might be improved on.

Read Paper

Five Years On – 2015

This survey followed on from a similar questionnaire sent out in 2010 which fed directly into our strategy at the time. It looked at the kinds of services our community wanted to see from CLAPA and how they responded to our work so far.

This survey is currently being used to help us write our strategy for the next few years.

Report – PDF

Spring Survey – 2014

In this survey, we wanted to get a ‘snapshot’ of our community’s opinions by asking short questions about a wide range of topics – everything from diagnosis through to returning to treatment as an adult!

We have two available reports:

Adults with a cleft – PDF

Parents & Carers – PDF



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