History and Funding
The Registry of Switzerland was originally set up and became a member of EUROCAT in 1988.
The Registry has formerly been established in collaboration with members from the Swiss Academy of Medical Sciences and from the Swiss Society of Paediatrics. The system was financed by the Swiss Federal Agency for Statistics for the Central registry and by the cantonal health department for some cantonal registries.
Different swiss cantonal registries sent their data to the Central Registry in Lausanne. The aim at the beginning was to cover the whole country (80 000 births/year). In the first years of activity, 30-81% of births were surveyed according to the cantons. For financial reasons, many cantons had to stop this activity and in 1993 the Swiss Registry covered 50% of all births in Switzerland.
In 1998, the following cantons were included in the programme: Zurich, Fribourg, Argovie, Tessin, Vaud, Valais, Neuchatel and Jura. The Registry was located in the Division of Medical Genetics in the University Hospital of Lausanne.
As the level of ascertainment was quite heterogeneous between the local cantonal registries and their activities fluctuating according to the years (cf prevalence rate <200 per 10,000), it was decided in January 2002 to restrict the registration to canton of Vaud only and to change the name of the registry: Registry of Vaud (Switzerland).
Since 2018, the registry is located in the Department of Woman-Mother-Child.
The registry is now funded by a public health project of the canton of Vaud.
Population Coverage
The Registry is population-based and as such it covers all mothers resident in the canton of Vaud. The percentage of mothers delivering in a hospital outside the Registry area is not known precisely although it is thought to be very low. The Registry covers about 10% of all births in Switzerland (approximately 8,500 births annually). The changing coverage is detailed above.
Sources of Ascertainment
Reporting is voluntary. Active case finding and multiple sources of information are used: delivery units, paediatric departments, cytogenetic labs and pathology units. Data about different methods of prenatal screening and diagnosis are collected (ultrasound, serum markers, cytogenetic and molecular). Paediatric cardiology and prenatal echography centers supply systematic reports to the registry.
Maximum Age at Diagnosis
There is no upper age limit.
Terminations of Pregnancy for Fetal Anomaly (TOPFA)
Termination of pregnancy is legal up to 12 weeks gestation under most circumstances but this limit is extended to 24 gestational weeks if a congenital anomaly is diagnosed. In the latter circumstance, additional permission must be granted by two further physicians. Induced abortions following prenatal diagnosis are included in the Register.
Stillbirth and Early Fetal Deaths
The official stillbirth definition is: a gestation age of >=27 weeks or length >=30cm and these are included in the register. Early fetal deaths/spontaneous abortions are included if they are 20 gestational weeks or more with no weight restrictions. Autopsy statistics were not available.
Exposure Data Availability
Information on maternal occupations and diseases, maternal drug use, outcome of previous pregnancies is available for the malformed infants.
Denominators and Controls Information
Background data on births are available from the Service Cantonal de Recherche et d'Information Statistique (SCRIS).
Ethics & Consent
The registry does not require ethics committee approval in order to collect and store data.
National legislation does not require informed consent in order to register a baby with a congenital anomaly. However since 2007, according to a national law about genetic analysis, the parents have to sign informed consent for these analyses.
Address for Further Information
Dr Joanna Sichitiu
Registre Vaudois des malformations EUROCAT-Vaud,
Maternité,
Départment Femme-Mère-Enfant,
CH-1011 CHUV Lausanne,
Switzerland
Tel: +41 795563467
Email: joanna.sichitiu@chuv.ch
Updated 12.2.2024