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Opportunities and challenges in establishing a cohort study: An example from cleft lip/palate research in the United Kingdom

Ho, Karen M.; Stock, Nicola Marie; Humphries, Kerry; St. Pourcain, Beate; Bailey, Maggie; Persson, Martin; Ho, Karen; Ring, Susan; Marsh, Cathy; Albery, Liz; Rumsey, Nichola; Sandy, Jonathan


Karen M. Ho

Nicola Stock
Occasional Associate Lecturer - HAS - HSS

Kerry Humphries

Beate St. Pourcain

Maggie Bailey

Martin Persson

Karen Ho

Susan Ring

Cathy Marsh

Liz Albery

Jonathan Sandy


© Copyright 2016 American Cleft Palate-Craniofacial Association. Background: Cleft lip and/or palate (CL/P) is one of the most common birth conditions in the world, but little is known about its causes. Professional opinion remains divided as to which treatments may be the most beneficial for patients with CL/P, and the factors that contribute to psychological adjustment are poorly understood. The use of different methodological approaches and tools plays a key role in hampering efforts to address discrepancies within the evidence base. A new UK-wide program of research, The Cleft Collective, was established to combat many of these methodological challenges and to address some of the key research questions important to all CL/P stakeholders. Objective: To describe the establishment of CL/P cohort studies in the United Kingdom and to consider the many opportunities this resource will generate. Results: To date, protocols have been developed and implemented within most UK cleft teams. Biological samples, environmental information, and data pertaining to parental psychological well-being and child development are being collected successfully. Recruitment is currently on track to meet the ambitious target of approximately 9800 individuals from just more than 3000 families. Conclusions: The Cleft Collective cohort studies represent a significant step forward for research in the field of CL/P. The data collected will form a comprehensive resource of information about individuals with CL/P and their families. This resource will provide the basis for many future projects and collaborations, both in the United Kingdom and around the world.


Ho, K. M., Stock, N. M., Humphries, K., St. Pourcain, B., Bailey, M., Persson, M., …Sandy, J. (2016). Opportunities and challenges in establishing a cohort study: An example from cleft lip/palate research in the United Kingdom. Cleft Palate-Craniofacial Journal, 53(3), 317-325.

Journal Article Type Article
Publication Date May 1, 2016
Deposit Date Feb 18, 2015
Journal Cleft Palate-Craniofacial Journal
Print ISSN 1055-6656
Electronic ISSN 1545-1569
Publisher SAGE Publications
Peer Reviewed Peer Reviewed
Volume 53
Issue 3
Pages 317-325
Keywords cleft, gene, cause, environment, treatment, psychological adjustment, measurement, cohort study, visible difference
Public URL
Publisher URL
Additional Information Additional Information : © 2016. Reprinted by permission of SAGE Publications


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