National Quality Registry for Childhood Cancer
Registry category: Cancer diseases
Certification level: 3
Central personal data controller (CPUA): Karolinska Universitetssjukhuset
Registration of clinical characteristics, treatment and treatment outcomes for children (aged 0-18) with cancer and hematologic diseases, or other diseases treated with paediatric oncology methods (for other diagnoses, primarily allogeneic stem cell transplantation), diagnosed and treated at paediatric oncology centres in Sweden. Paediatric oncology centres have registered these variables since the beginning of the 1980s (in some cases and for some diseases, earlier than this) and worked with standardisation and development of treatment and evaluation of these since the start.
The aim of the registry is to evaluate childhood cancer treatment in Sweden. The registry also includes registrations from other Nordic countries through cooperation in the Nordic Society of Paediatric Haematology and Oncology (NOPHO). Registration also provides support for ongoing and planned treatment studies, which are usually based on registry data.
Find contact information on the registry’s website.