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Treatment outcome for children born with cleft lip and palate.

In the management of children born with orofacial clefting there is a danger that the information on genetic and environmental influences together with data emerging from randomized controlled trials are divorced from the current reality of clinical care. It is important that treatment outcomes are constantly reviewed as new evidence unfolds but for many children born with a cleft, basic care will be more rapidly improved through examination of quality of outcomes than the higher level scientific exploration of gene-environment interactions and clinical trials. There are good examples of how scrutiny of outcomes has led to changes in service and an improvement of care. These changes have subsequently improved outcomes. These examples will be explored in some depth as well as the outcomes that are seen as relevant to carers and users. Finally the need to determine the influence of genetics and environments on outcomes is seen as the ultimate goal of total care. If we are clear as to how outcomes might be improved for an individual then reference to genetic determinants will provide a bespoke care pathway for surgical interventions, speech and language therapy, psychological and educational support as well as many other areas. This will however require a detailed longitudinal cohort study of all phenotypes to understand the gene-environment interactions, individual development and treatment outcomes. Thus, outcomes can be used to define service and policy, drive scientific investigation, but most importantly improve the care of those children born with a cleft.

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