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The Cleft Collective: protocol for a longitudinal prospective cohort study
Amy J V Davies1, Kerry Humphries2, Sarah J Lewis3
1Bristol Dental School, The Cleft Collective, University of Bristol Faculty of Health Sciences, Bristol, UK a.davies@bristol.ac.uk.
Insights
The Cleft Collective is a UK study tracking children with cleft lip and/or palate (CL/P) and their families. This research aims to improve understanding, treatment, and long-term care for CL/P, enhancing quality of life.
Area of Science:
- Medical research
- Genetics
- Public health
Background:
- Cleft lip and/or palate (CL/P) affects 1 in 700 newborns globally.
- Families of children with CL/P face developmental challenges.
- Existing research on CL/P is often limited by small sample sizes and single-center data.
Purpose of the Study:
- To establish a comprehensive national cohort study in the UK for CL/P.
- To create a global research resource for understanding CL/P causes, treatments, and outcomes.
- To improve the quality of life for individuals with CL/P through enhanced understanding and care.
Main Methods:
- A longitudinal prospective cohort study design.
- Recruitment of children with CL/P and their families across the UK from November 2013 to September 2027.
- Collection of biological samples, parental/child questionnaires, surgical data, and linkage to external data sources.
Main Results:
- The Cleft Collective aims to recruit 4822 children with various types of CL/P.
- Biological samples and detailed data are collected throughout the child's development.
- Patient and Public Involvement ensures research guidance and relevance.
Conclusions:
- The Cleft Collective provides a robust platform for CL/P research.
- Findings will be disseminated through publications, conferences, and public channels.
- The study seeks to significantly advance care and outcomes for individuals with CL/P.
Introduction:
Cleft lip and/or palate (CL/P) affects 1 in 700 live births globally. Children born with CL/P and their families face various challenges throughout the child's development. Extant research is often limited by small numbers and single-centre data. The Cleft Collective, a national cohort study in the UK, aims to build a resource, available to collaborators across the globe, to understand causes, best treatments and long-term outcomes for those born with CL/P, ultimately seeking to enhance their quality of life through improved understanding and care.
Methods And Analysis:
A longitudinal prospective cohort study of children born with CL/P and their families. Recruitment occurs across the UK and started in November 2013. Recruitment will continue until September 2027 with an estimated final sample of 4822 children born with CL/P (1157 cleft lip including/excluding the alveolus; 2112 cleft palate only; 1042 unilateral cleft lip and palate and 511 bilateral cleft lip and palate). Biological samples are collected from all recruited members of the family. Parental and child questionnaires are collected at key time points throughout the child's development. Surgical data are collected at the time of surgical repair of the child's cleft. Consent is obtained to link to external data sources. Nested substudies can be hosted within the cohort. Regular engagement with participants takes place through birthday cards for the children, social media posts and newsletters. Patient and Public Involvement is conducted through the Cleft Lip And Palate Association and Cleft Collective Patient Consultation Group who provide insightful and essential guidance to the Cleft Collective throughout planning and conducting research.
Ethics And Dissemination:
The Cleft Collective was ethically approved by the National Research Ethics Service committee South West-Central Bristol (REC13/SW/0064). Parental informed consent is required for participation. Findings from the Cleft Collective are disseminated through peer-reviewed publications, conference presentations, newsletters and social media.
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