Disease registries

Disease registries enable epidemiological information about the frequency and distribution of a certain disease to be recorded and evaluated. If possible or known risk factors are also recorded, relationships between risk factors and the disease can be identified, providing important information about the causes of that disease. This is important in assessing the medical care situation, creating future framework conditions and prevention measures, and planning care. In this context, disease registries are a central element in health-policy decisions.

These epidemiological registries are not the same as clinical registries, in which data about a disease and a certain therapy are recorded for a hospital, a hospital network or a care network. The latter type of registry is used to compare and evaluate different approaches to therapy and care structures. The resulting information can be used to instigate measures to improve the quality of treatment and care.

There are several registries in Switzerland for a number of diseases such as cancer, heart attacks, rheumatoid diseases and haemophilia. Only the cantonal and regional cancer registries receive public funding, while registries for other diseases are funded privately. The latter category is not subject to specific regulations concerning organisation and activities on either a federal or cantonal level.

Cancer Registration Act

The Cancer Registration Act (CRA) came into force on 1 January 2020. The new countrywide and uniform registration of all cancers represents major progress in the treatment of cancer patients in Switzerland. The new legislation requires all doctors, laboratories, hospitals and institutions in the healthcare system that diagnose cancer to report the data relating to these cancers to the cantonal cancer registry or the childhood cancer registry. The National Agency for Cancer Registration (NACR) and the Swiss Childhood Cancer Registry (ChCR) then merge the data and produce pioneering health reports and cancer statistics on the basis of their analysis in collaboration with the respective official bodies.