The Spires Cleft Centre has a strong history of multidisciplinary clinical research and audit. We currently have an active program of research and present regularly both at national and international meetings.
From time to time we may invite families and young people to take part in a research project to help us develop our understanding and pioneer the best possible care. We will always give you plenty of information to help you decide if you would like to take part. We do understand that some people may not wish to be involved and this would not affect your care in any way.
The Craniofacial Anomalies Network (CRANE)
CRANE maintains a national register of UK cases of cleft lip and / or palate. A member of the Spires Cleft Centre will ask you or your child if they can register this information with CRANE. The information that CRANE collects is used to:
- Support research into the causes and treatment of cleft lip and / or palate
- Report on the quality of care for people with a cleft lip and / or palate
- Record the number of children born each year with a cleft lip and / or palate
- Increase our understanding of cleft lip and / or palate
- Promote high standards of clinical care
It is optional to register your / your child’s details on the CRANE register.
The Cleft Collective
The Cleft Collective cohort studies investigate the biological and environmental causes of a cleft lip and / or palate, the best treatments for cleft lip and / or palate and the impact of being born with cleft lip and / or palate on the individual and their family.
You might be approached by a research nurse during one of your early visits to the Spires Cleft Centre in order to see if you are willing to take part.
The Spires Cleft Centre has been working with colleagues from five other countries around the world to support researchers at McMaster University, Canada, to develop the Cleft-Q. The Cleft-Q is a questionnaire designed to assess the views of people born with a cleft lip and / or palate with regards to their appearance, facial function and quality of life.
The Timing of Primary Surgery for Cleft Palate (TOPS) trial
This project is funded by the National Institute of Health, National Institute for Dental and Craniofacial Research (NIH-NIDCR). It is an international randomised control trial which is investigating the impact of the timing of surgery for cleft palate repair on speech development.
Recruitment has now closed for this study and participants continue to be followed up by speech and language therapists within the Spires Cleft Centre.
The 100,000 Genomes Project
This project aims to sequence 100,000 genomes from around 85,000 people in order to discover new diagnoses, as well as to develop new and more effective treatments.
Recruitment has now finished for this project, however the results of participants recruited from the Spires Cleft Centre will be returned to the Salisbury and Oxford teams throughout 2019.
Deciphering Developmental Disorders (DDD) project
The DDD study aims to advance clinical genetic practice for children with developmental disorders. Recruitment for this study has now finished, however many individuals under the care of the Spires Cleft Centre have taken part in the study.
The impact of being born with a cleft lip and / or palate on feeding behaviour
This project is being run by clinical psychologists in the Oxford team to investigate the impact of being born with a cleft lip and / or palate on feeding behaviour later on in childhood.
We have now completed this study. Thank you to all 101 parents who took part in this research.
We found that children born with a cleft and their parents were more likely to demonstrate unhelpful mealtime behaviours (e.g. fussy or picky eating) if the child required medication for reflux in infancy or if they had previously required a feeding tube of some kind. Children who were allowed screens, such as a tablet or television at mealtimes also demonstrated significantly poorer mealtime outcomes.
Things that were shown not to have an effect were whether the child was born prematurely, ever on a ventilator or still had a gap in their palate following palate repair.
There was no relationship between mealtime behaviours and the number of operations a child had undergone or the age that they were at their first surgery. Nor was age of weaning associated with later problems. However, parents of children with difficult mealtime behaviours were more likely to engage in unhelpful parental feeding strategies themselves.
We explored the effect of age and cleft type and found that age predicted the total frequency of mealtime behaviours, with 10-year-olds having fewer problems than those aged 18-24 months or 5 years of age.
We also found that children born with a cleft lip and palate, but not a cleft palate only, showed the most unhelpful mealtime behaviours.
Children born with a cleft, and their parents, may therefore experience a greater frequency of difficult mealtime behaviours if they: have a cleft lip and palate, if they required medication for reflux, if they required a feeding tube or are allowed screens at mealtimes. As in the general populations these difficulties tend to reduce with age. When we compared our findings to findings in the general population we did not find any increases in unhelpful mealtime behaviour in children born with a cleft, compared to children born without a cleft.
Our Clinical Nurse Specialists continue to provide support and advice regarding early feeding. Any parents with concerns about their child developing picky or fussy eating later in childhood are welcome to request support from the Spires psychology team.