Clinical registry of childhood cancer and late effects of childhood cancer treatment

Abstract

Around 70 children and adolescents under the age of 20 are diagnosed with cancer in Slovenia every year. Incidence is rising over time, but survival is improving significantly, resulting in a decrease in mortality and an increase in the number of survivors who need lifelong follow-up because of the risk of late effects. The Slovenian Cancer Registry's standard dataset contains data that is too scarce for some in-depth studies on childhood and adolescent cancers and late effects in survivors. At the Cancer Registry, we have therefore started activities in 2020 to establish a clinical registry of childhood cancer and late effects of childhood cancer treatment, which acts as a population-based registry with a highly expanded dataset. Its primary purpose is to systematically record the late effects of cancer treatment. It consists of two modules. The first is managed by the Cancer Registry and, using an active registration approach through access to the electronic patient records of the Ljubljana Paediatric Clinic and other institutions, it allows for a detailed inventory of the disease (in line with international rules), primary treatment (operations, cumulative doses of individual therapeutics, cumulative radiation doses, haematopoietic stem cell transplantation and other treatments, side effects of treatment) and recurrences, where the treatment is registered to the same level of detail as the primary treatment. The first module already contains data for the incidence year 2019, with accelerated registration of subsequent years to follow. The second module will be operated by the Late effects unit of the Institute of Oncology Ljubljana, where all collected data will be accessible during the patient's visit, and where visits, tests performed, questionnaires completed and late effects identified can be prospectively recorded. The second module is undergoing testing for user-friendliness, and we are developing automation of the treatment summary (survivorship passport) and follow-up recommendations.

Keywords

• cancer registry
• clinical registry
• childhood cancer
• adolescent cancer
• late effects