Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2020 Oct;9(3S):S40-S44.
doi: 10.1016/j.ejwf.2020.09.003.

Cleft lip and palate: Care configuration, national registration, and research strategies

Jonathan Sandy  1 , Amy Davies  2 , Kerry Humphries  2 , Tony Ireland  2 , Yvonne Wren  2
Affiliations

Cleft lip and palate: Care configuration, national registration, and research strategies

Jonathan Sandy et al. J World Fed Orthod. 2020 Oct.

Abstract

A child born with a cleft lip and palate will face 20 years or more of hospital care and surgery. This is a global problem with approximately 10 million people affected worldwide. Various models of care exist around the condition, and the best configurations of services within an economy need to be optimized. We provide examples of how centralized care can improve outcomes and provide an opportunity to establish national registries, and then emphasize the opportunities for building research platforms of relevance. The default of any cleft service should be to centralize care and enable cleft teams with a sufficient volume of patients to develop proficiency and measure the quality of outcomes. The latter needs to be benchmarked against the better centers in Europe. Two areas of concern for those with cleft are morbidity/mortality and educational attainment. These two issues are placed in context within the literature and wider approaches using population genetics. Orthodontists have always played a key role in developing these initiatives and are core members of cleft teams with major responsibilities for these children and their families.

Keywords: Cancer; Centralization; Cleft lip and palate; Education; Outcomes.

PubMed Disclaimer

Figures

Fig. 1
Fig. 1
Cleft phenotypes showing an intact and normal palate: CL, unilateral cleft lip and palate (UCLP), bilateral cleft lip and palate (BCLP), and CPO.
Fig. 2
Fig. 2
The Cleft Collective is a longitudinal cohort study of children born with cleft and their families in the United Kingdom. Blood is collected from those diagnosed through antenatal scans (cord blood) and from the child at operation, as well as discarded tissue. The cleft teams return surgical details. Families are asked to provide saliva and fill in questionnaires. The figures to date are shown against samples and questionnaires. The study is ongoing.
None
See this image and copyright information in PMC

References

    1. Mossey P.A., Little J., Munger R.G., Dixon M.J., Shaw W.C. Cleft lip and palate. Lancet. 2009;374:1773–1785. - PubMed
    1. Dixon M.J., Marazita M.L., Beaty T.H., Murray J.C. Cleft lip and palate: understanding genetic and environmental influences. Nat Rev Genet. 2011;12:167–178. - PMC - PubMed
    1. Thompson J.M., Stone P.R., Sanders M., van der Zee H., Borman B., Fowler P.V. The incidence of orofacial cleft in live births in New Zealand. N Z Med J. 2016;129:64–71. - PubMed
    1. Sivertsen A., Wilcox A.J., Skjaerven R. Familial risk of oral clefts by morphological type and severity: population-based cohort study of first-degree relatives. BMJ. 2008;336:432–434. - PMC - PubMed
    1. Birnbaum S., Ludwig K.U., Reutter H. Key susceptibility locus for nonsyndromic cleft lip with or without cleft palate on chromosome 8q24. Nat Genet. 2009;41:473–477. - PubMed

Publication types