National registries exist already for several congenital anomalies. In most neighboring countries there are registries for cleft lip and palate, and we have established the present one in Switzerland in 2011 to investigate this condition.
Who should participate?
All patients with a cleft lip and palate born in Switzerland since 2011.
What should you do?
- You will have to meet with the doctor looking after your child to answer a short questionnaire about your child, the type of the cleft, the course of the pregnancy and your personal and family history.
- These data are then transmitted to the Geneva Children’s Hospital Research Platform and stored in a secure computer file. These data are strictly confidential.
What should you know?
- Your child and yourself will not need to undergo any further examination. Most information is already available in your child’s medical record and are well known to you.
- The participation in this registry is on a volunteer basis and has no cost (free) to you.
- The creation of this registry was approved by the Research Ethics Board of the Department of Children and Adolescents of Geneva University Hospitals and by the Swiss Cleft Lip and Palate Association.
- The results of data analysis may be used for scientific publications, in this case data is anonymized, that is to say that your child cannot be identified.