Cancer Registration Act
The Federal Act on the Registration of Cancerous Diseases (Cancer Registration Act – CRA; 818.33) regulates the recording of informative and reliable data about cancer in Switzerland. It introduces some new aspects such as patient protection, a reporting obligation, the social security number (AHV number) as a personal identifier and standardisation of the data set, registration and data transfer.
Potential of the Cancer Registration Act
The potential of the Cancer Registration Act lies on the one hand in the improvement it brings to the data available for observing the development of cancer. At the same time these data can be used to develop, implement and review prevention and early detection programmes, to evaluate the quality of care, diagnosis and treatment, and to aid care planning and research.
Entry into force of the Cancer Registration Act
Parliament passed the Cancer Registration Act (CRA; SR 818.33) in March 2016. The Federal Council approved the associated Ordinance (CRO; SR 818.331) on 11 April 2018. The Act and the Ordinance come into force on 1 January 2020.
Tasks of the Childhood Cancer Registry (Art. 21, CRA)
The Childhood Cancer Registry registers the data of patients who develop cancer at a young age (under 20) and evaluates this information.
Its tasks are:
- to check whether the Childhood Cancer Registry is responsible for the reported cases of cancer,
- to supplement, update and register the reported information,
- to register cases of cancer that have not been reported by consulting the statistics on cause of death kept by the Federal Statistical Office (FSO) and the medical statistics kept by hospitals,
- to prepare the data for statistical evaluation, evaluations relating to health reporting, evaluation of the quality of diagnosis and therapy and for further use in research projects,
- to carry out health reporting on cancer in children and adolescents and to publish the results,
- to provide documentation used to inform young cancer patients about their right to object, and documentation to ensure the uniform, standardised recording and transfer of the data on childhood cancer for registration,
- to collaborate with international organisations and institutions working on childhood cancer.
Data Protection Law
The Federal Act on Data Protection (DPA) is the law governing data protection in Switzerland. Its purpose is to protect the identity and basic rights of natural and legal persons whose data are being processed.
The DPA provides for the right to obtain information (Art. 8). The right to information states that the owner of the data collection (e.g. the Childhood Cancer Registry) must provide the affected person (e.g. the patient or legal representative) with full information. The owner must also provide information on the origin of the data and the purpose for which it is being processed. This information must generally be provided in writing and free of charge.