History

In 1976, the Swiss Paediatric Oncology Group (SPOG) created a central archive for all paediatric cancer patients who participated in clinical studies. Since 1981, all patients residing in Switzerland were registered, including those not taking part in a clinical study. In 1992, this archive was transformed into an electronic database and an active annual follow-up was implemented, with collection of information on late-effects detected in cured patients. Since January 2004, the database is run in collaboration with the Institute of Social and Preventive Medicine at the University of Bern. There it has been completely rebuilt and adapted to latest international standards.

Inclusion Criteria

The Swiss Childhood Cancer Registry includes all cases of malignant solid tumours, leukaemia and lymphomas, tumours of the central nervous system (including benign) and Langerhans cell and other Histiocytoses in children and adolescents (up to 20 years of age) who are resident in Switzerland or Liechtenstein or are treated in Switzerland. Since 2014 it also registers some benign tumours, rare neoplasms of the liver as well as a specific form of the aplastic anaemia, which can develop into leukaemia. The tumours are coded according to the international classification of diseases for oncology, 3rd edition (ICD-O-3), and the international classification of childhood cancer 3rd edition (ICCC-3).

Collected data

The Swiss Childhood Cancer Registry collects demographic data, names and addresses of patients, important information about diseases occurring in the family, prior illnesses in the child, diagnostic information (exact diagnosis, localisation and morphology of the tumour, stage, metastases) as well as detailed information on treatment and prognosis (modalities of treatment, inclusion in clinical studies, remissions (reduction or disappearance of symptoms) and relapses, long-term results, secondary tumours and death.

Data source

Main data sources are all departments for paediatric haematology-oncology of all children’s hospitals in Switzerland (all paediatric cancer centres). However, the SCCR also co-operates with other hospitals and doctors, with the cantonal cancer registries, pathology institutes and other routine-data sources to collect and validate information.

Current data

As of 31. December 2016, the registry contained 10391 tumours diagnosed in 10250 patients, aged 0 to 20 years, 56% were boys and 44% girls. Of these, 2358 (23%) have died, all others survived. The most frequent diagnoses in Swiss patients occurring during the last 10 years are: leukaemia (29%), followed by central nervous system (mostly brain) tumours (20%), lymphomas (14%), and soft tissue sarcomas (7%).

© ISPM - University of Bern 2016