Our research - information for professionals

In order to help us understand more about what causes cleft, what the best treatments are and the psychological impact of cleft, two separate cohorts have been set up: a Birth Cohort and a 5-year-old Cohort.

Birth Cohort

There are two strands to the Birth Cohort: postnatal recruitment and antenatal recruitment.

Postnatal recruitment (after birth)

Families will be approached to take part in the Cohort Studies at some time between the birth of the child and the child’s first surgery by a member of the cleft team.  We hope to recruit approximately 1,450 families over 4 years.

From this group of families, we will collect:

Parent(s)Child with a cleft
Saliva Blood (at time of surgery)
Questionnaires Discarded lip or palate tissue (at time of surgery)

Download a simplified diagram (PDF, 180kB) explaining what information we will collect, when, why and from whom, from the Postnatal Birth Cohort.

Download a simplified timeline (PDF, 58kB) timeline, explaining what we will ask families to do and when.

Antenatal recruitment (before birth)

Families will be approached to take part in the Cohort Studies at some time between the 20 week scan and the child’s birth by a member of the cleft team. We hope to recruit approximately 300 families over 4 years.  The number of families we hope to recruit at this stage is smaller because we will need to involve a number of maternity units in addition to the cleft teams.

From this group of families we will collect:

Parent(s)Child with a cleft
Saliva Blood
Questionnaires Discarded lip or palate tissue
Cord blood (the blood that remains in the placenta and umbilical cord after a baby is born)

Download a simplified diagram (PDF, 82kB) explaining what information we will collect, when, why and from whom, from the Antenatal Birth Cohort.

Download a simplified timeline (PDF, 63kB), explaining what we will ask families to do and when.

5-year-old Cohort

5-year audit clinic

Families will be approached to take part in the Cohort Studies around the time of their child’s 5-year audit clinic by the cleft team.  We hope to recruit approximately 1,450 families over 4 years.

From this group of families, we will collect:

Parent(s)Child with a cleft
Saliva Saliva
Questionnaires

Download a timeline simplified timeline (PDF, 97kB), explaining what we will ask families to do and when. Download a simplified diagram simplified diagram (PDF, 173kB) explaining what information we will collect, when, why and from whom, from the 5-year-old Cohort.

Cleft Care UK (also known as CSAG II)

We have also asked approximately 250 families who took part in the ‘Cleft Care UK’ study if they would also like to be enrolled in The Cleft Collective Cohort Studies. 

From this group of families, we will collect:

Parent(s)Child with a cleft
Saliva Saliva
Questionnaires

Download a timeline simplified timeline (PDF, 99kB), explaining what we will ask families to do and when. Download a simplified diagram simplified diagram (PDF, 79kB) explaining what information we will collect, when, why and from whom, from the Cleft Care UK Cohort.

All Cohorts

We will also collect saliva from around 200 siblings, as well as questionnaire data from the child with a cleft when they are old enough to complete questionnaires themselves.

We hope to link to families’ medical and educational records, as well as those records held on the CRANE database.

Please use the tabs to your left for more information about The Cleft Collective Cohort Studies, and to find out how you can get involved.

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