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.

ABSTRACT:

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%

SUBMITTER: Mihor A 

PROVIDER: S-EPMC11853519 | biostudies-literature | 2025 Feb

REPOSITORIES: biostudies-literature