Researchers interested in cleft can apply to use the anonymous data and anonymous biological samples you and your family provide to answer their research questions about cleft lip and/or palate. All researchers will need approval from our Project Management Group and a research ethics committee to make sure your rights are protected. These researchers will never have access to your personal data.

Research proposals which have been approved to date are listed below:

Project number CC024 - Triangulating evidence from multiple control groups to study the causes and consequences of being born with cleft lip/palate

This study will compare data from the Cleft Collective to data in general population cohort studies. This will help us understand and reduce biases that may occur from using one cohort study for comparison.

Project number CC023 - Consonant inventories of children born with cleft palate at the age of 18-24 months in the UK

Using data provided by Speech and Language therapists for the Cleft Collective Speech and Language Study this study will describe the speech sound skills for children born with a cleft palate.

Project number CC022 - Do infants born with cleft palate and Robin Sequence (RS) exhibit fewer communication behaviours compared to those with isolated cleft palate (ICP)?

Using parent reported data collected as part of the Cleft Collective Speech and Language Study this study will compare children's communication behaviours between children with isolated cleft palate and robin sequence at age 13 months.

Project number CC021 - Validation of the cleft phenotype in the Cleft Collective

In collaboration with The Cleft Registry and Audit NEtwork (CRANE) and the Cleft Multidisciplinary Collaborative we will make sure cleft classification is recorded correctly to ensure all research using the Cleft Collective resource is as accurate as possible.

Project number CC020 - Early communication skills in children born with cleft palate with or without cleft lip

Using parent reported data at 18 months of age we will use data on children's communication skills and compare with a sample unaffected by cleft.

Project number CC019 - A review of the utilisation of the Cleft Lip and Palate Association (CLAPA)’s services by the cleft community

Using parent reported data collected at many different time points CLAPA will use the anonymous data to identfy if there is a difference in characteristics between those people who have received support from CLAPA and those who have not.

Project number CC018 - Do early communication behaviours of infants born with cleft palate vary by cleft subtypes?

Using parent reported data collected as part of the Cleft Collective Speech and Language Study this study will compare children's communication behaviours at age 13 months.

Project number CC017 - Evaluating the psychological wellbeing and behavioural development of children with cleft lip and/or palate at age 5 and 8

Using parent reported data collected at age 5 and 8, this study will look to summarise the psychological wellbeing and behaviousal development of children with cleft lip and/or palate.

Project number CC016 – Exploring the relationship between palatal cleft type and width and the use of relieving incisions (approved January 2019)

Using data collected from the surgeon following a baby’s cleft palate repair and data collected at age 5, this study will look at which surgical techniques help with better speech and growth outcomes.

Project number CC015 – Exploring current trends in cleft surgery across the UK (approved January 2019)

Data collected from the surgeon following a baby’s cleft lip or palate repair will be used to describe the techniques used by different surgeons for cleft lip and palate repair across the country.

Project number CC013 – A genome wide association (GWAS) study of cleft with stratification by cleft subtype. (approved November 2018)

Using biological sample data collected from the mother and child we will explore the genetic factors which are specific to cleft lip, cleft palate and cleft lip and palate.

Project number CC012 – Hypothesis-driven and hypothesis-free Mendelian randomization analyses to identify potentially modifiable risk factors for cleft and cleft-related outcomes (approved November 2018)

Using data collected from biological samples this study will be able to explore and identify modifiable factors which may increase the chance of a cleft.

Project number CC011 – A genome wide association study of mums of children born with a cleft (approved November 2018)

Using data collected from biological samples of the mother this study will be able to explore and identify genetic factors which may increase the chance of a cleft.

Project number CC010 – Is there a relationship between hearing loss and cleft speech characteristics in children born with cleft palate? (approved October 2018)

This study will investigate the impact hearing loss has on the development of a child’s speech when they have a cleft palate.

Project number CC009 – Exploring relationships and associations between children’s cleft type and early speech and language development (approved September 2018)

Using data collected at the age of 3 this study will identify if there are any differences in how well a child's speech is understood by the people around them based on cleft type

Project number CC008 – Parental psychological adjustment following a diagnosis of cleft lip and/or palate and associated risk factors (approved July 2017)

Using data from the Cleft Collective we will be able to explore how a parent adjusts psychologically after the diagnosis of their child’s cleft lip and/or palate.

Project number CC007 – Satisfaction with healthcare among parents of children born with cleft lip and/or palate (approved July 2017)

This study uses data about parental satisfaction with the care they have been provided around the time of a child’s surgery and at 18 months.  Data from these two time points will be compared to see if there are any differences over time.

Project number CC006 – Understanding speech processing abilities and their relationship to PSD in children born with cleft palate. (The Speech Processing and ARticulation in children born with a Cleft palate (SPARC) study) (approved May 2017)

The SPARC study has been set up to look at a child’s speech processing and how this may relate to the way a child makes speech sounds.   Where consent has been obtained participants within the SPARC study that are also part of the Cleft Collective will have their data combined to help with the research.

Project number CC005 – Cognitive, social and emotional development among children born with cleft lip and/or palate at 18 months (approved May 2017)

Using data collected through the 18-month questionnaire this study looks to explore the early development of children.  The research will specifically look to explore early identifiers of cognitive, social and emotional difficulties.

Project number CC004 – Families’ Views on Anaesthesia and Surgery for Repair of Oral Cleft: A Qualitative Analysis of a Focus-group Discussion (approved March 2017)

This project invited participants to take part in a focus group which explores the parent’s thoughts and concerns regarding anaesthesia and surgery.  Results from the focus group will look to inform the design of future studies into anaesthesia.

Project number CC003 – What is the impact of cleft lip/palate on families' quality of life, and how might healthcare and support be improved? (approved November 2016)

A small number of Cleft Collective parents were interviewed to find out what impact a cleft lip and/or palate has on the quality of life of the family.  Parents were also asked about the care they have received and how this may be improved.

Project number CC002 – DNA methylation in blood and tissue of children with cleft lip/palate (approved August 2016)

This study compares 50 cleft lip samples, 50 cleft palate samples and 50 cleft lip and palate samples.  When comparing these samples we are able to see that the causes of each cleft type are likely to be different from one another.

Project number CC001 – Cellular characterisation of the human cleft palate with clinical correlation (approved March 2014)

This project uses cleft palate tissue from the Cleft Collective and Birmingham.  The samples are used to investigate the characteristics of palatal wound healing.