Aim of the registryThe main purpose of the registry is to obtain precise national epidemiological data regarding the type of clefts, with precise diagnosis, prevalence and possibly identify risk factors.
Secondary objectives are to formulate research hypothesis based on the results of the registry, to have data to answer public health questions and to better answer the questions of patients who want to be parents.
DesignThe registry collects prospectively all patients born in Switzerland from 2011 with a cleft of the lip and/or of the palate.
Exclusion criteriaPatients with a complex facial cleft other than cleft lip/palate.
Patients managed in Switzerland but living abroad and not having spent in Switzerland the first trimester of pregnancy.
MethodsThe form is filled after informed consent by a physician of the cleft team involved in the management of the patient, preferably during the first hospital admission of the patient for surgical treatment. The form is then sent by fax or by mail to the University of Geneva Children’s hospital Research Platform.
Data managementAll data is stored in a secure location and is anonymised prior to analysis.
Data validation is performed monthly, and if there is missing information we will contact the physician who submitted the form.