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Article History

Received: 5 June 2024

Revised: 23 July 2024

Accepted: 7 August 2024

First Online: 28 August 2024

Competing interests

: The authors declare no competing interests.

: This study is in accordance with the Declaration of Helsinki and was approved by the Institutional Review Board of the Princess Máxima Center for Pediatric Oncology (PMCLAB2020.162). This study is a retrospective study with use of care data that were already collected and there was no active consent needed for survivors according to Dutch legislation. Therefore, this retrospective study is exempted from review of Medical Ethical Committee review in compliance with Dutch law and regulations for health research involving human beings, because the subjects in this retrospective study were not subjected to procedures or to follow rules of behavior. However, informed consent was obtained from survivors who had been invited for active participation in DCCSS-LATER research projects. For survivors who had been invited for active participation in DCCSS-LATER research projects, but did not respond after repeated requests via a standardized protocol, and for survivors who had not yet been invited for active participation in any DCCSS-LATER research projects, specific consent was not needed in accordance with Dutch legislation. For 262 survivors who objected to adding linkage data directly to the DCCSS-LATER registry, but not object against anonymous linkage, we anonymized a minimal dataset via a trusted third party. Survivors who declined use of their healthcare data for research purposes were excluded from the eligible study cohort.