The Population-Level Surveillance of Childhood and Adolescent Cancer and Its Late Effects in Europe with an Example of an Effective System at the Slovenian Cancer Registry †.

Simple Summary: The collection of detailed data, including on diseases that develop as a result of treatment later in life (i.e., late effects), on children and adolescents with cancer through cancer registries is important to provide exact, complete and clinically relevant results. Therefore, we surveyed European registries about their practices, revealing that collecting data on late effects is not widespread and that most registries collect only a basic set of data with little clinical detail. The approach of the Slovenian Cancer Registry is also presented, along with observations obtained through the setting up and testing processes, namely the lack of standardization in the variable sets, definitions and methods of collection and the poorer quality of results with retrospective registration. This research highlights the need for stronger collaboration between registries in order to harmonize collection practices, as this would facilitate the collection of more than just a basic dataset by population-based cancer registries. Background: The registry-based collection of detailed cancer and late effect (LE) data in childhood and adolescent cancer (CAC) is rarely explored. Aim: We aimed to provide an overview of CAC registration practices in Europe and share a Slovenian example. Methods: We distributed a questionnaire among European cancer registries on disease, treatment and LE registration and present the system at the Slovenian Cancer Registry along with an example of retrospectively collected LE data from a cohort of central nervous system tumour survivors from 1983 to 2000. Kaplan–Meier and Cox regression were used to calculate the LE incidence. Results: Out of 27 responding registries, over 80% registered cancer type, vital status, death and second primary cancer data. Less than 20% registered cumulative doses of radiation and systemic therapy or progressions. Only three registered LEs. The obstacles in setting up LE collection in registries are a lack of standardization in the variable sets, definitions and methods of collection. In the retrospective cohort, neurological and endocrine LEs were most common. Females had a higher risk of endocrine LEs (HR of 1.89; 95% CI of 1.08–3.31), while patients treated with radiotherapy had higher risks of endocrine (3.47; 1.80–6.69), musculoskeletal and skin LEs (3.16; 1.60–6.26) and second primary cancers (2.85; 1.18–6.75). Conclusions: Standardization and harmonization are necessary to promote detailed CAC and LE registration. [ABSTRACT FROM AUTHOR]

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