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Opportunities and challenges in establishing a cohort study: an example from cleft lip/palate research in the United Kingdom
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2016 (English)In: Cleft Palate Craniofac J, Vol. 53, no 3, p. 317-25Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
2016. Vol. 53, no 3, p. 317-25
Keywords [en]
Biomedical Research/*trends, *Cleft Lip, *Cleft Palate, Cohort Studies, Humans, United Kingdom, *cause, *cleft, *cohort study, *environment, *gene, *measurement, *psychological adjustment, *treatment
National Category
Medical and Health Sciences
Identifiers
URN: urn:nbn:se:hkr:diva-19531ISBN: 1545-1569 (Electronic) 1055-6656 (Linking) OAI: oai:DiVA.org:hkr-19531DiVA, id: diva2:1329860
Note

Stock, Nicola Marie Humphries, Kerry Pourcain, Beate St Bailey, Maggie Persson, Martin Ho, Karen M Ring, Susan Marsh, Cathy Albery, Liz Rumsey, Nichola Sandy, Jonathan eng Cleft Palate Craniofac J. 2016 May;53(3):317-25. doi: 10.1597/14-306. Epub 2015 Jun 11.

Available from: 2019-06-25 Created: 2019-06-25 Last updated: 2019-09-19Bibliographically approved

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CiteExportLink to record
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Cite
Citation style
  • apa
  • harvard1
  • ieee
  • modern-language-association-8th-edition
  • vancouver
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More styles
Language
  • de-DE
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  • nn-NB
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  • Other locale
More languages
Output format
  • html
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  • asciidoc
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