Questionnaire- and linkage-based outcomes in Dutch childhood cancer survivors: Methodology of the DCCSS LATER study part 1

DCCSS LATER Study Grp, Jop C. Teepen, Judith L. Kok, Elizabeth A.M. Feijen, Jacqueline J. Loonen, Marry M. van den Heuvel-Eibrink, Helena J. van der Pal, Wim J.E. Tissing, Dorine Bresters, Birgitta Versluys, Martha A. Grootenhuis, Marloes Louwerens, Sebastian J.C.M.M. Neggers, Hanneke M. van Santen, Andrica de Vries, Geert O. Janssens, Jaap G. den Hartogh, Flora E. van Leeuwen, Nynke Hollema, Nina StreefkerkEllen Kilsdonk, Margriet van der Heiden-van der Loo, Eline van Dulmen-den Broeder, Cécile M. Ronckers, Leontien C.M. Kremer*

*Bijbehorende auteur voor dit werk

OnderzoeksoutputAcademicpeer review

6 Citaten (Scopus)
6 Downloads (Pure)


Background: Childhood cancer survivors are at risk for developing long-term adverse health outcomes. To identify the risk of and risk factors for specific health outcomes, well-established cohorts are needed with detailed information on childhood cancer diagnosis, treatment, and health outcomes. We describe the design, methodology, characteristics, and data availability of the Dutch Childhood Cancer Survivor Study LATER cohort (1963–2001) part 1; questionnaire and linkage studies. Methods: The LATER cohort includes 5-year childhood cancer survivors, diagnosed in the period 1963–2001, and before the age of 18 in any of the seven former pediatric oncology centers in the Netherlands. Information on health outcomes from survivors and invited siblings of survivors was collected by questionnaires and linkages to medical registries. Results: In total, 6165 survivors were included in the LATER cohort. Extensive data on diagnosis and treatment have been collected. Information on a variety of health outcomes has been ascertained by the LATER questionnaire study and linkages with several registries for subsequent tumors, health care use, and hospitalizations. Conclusion: Research with data of the LATER cohort will provide new insights into risks of and risk factors for long-term health outcomes. This can enhance risk stratification for childhood cancer survivors and inform surveillance guidelines and development of interventions to prevent (the impact of) long-term adverse health outcomes. The data collected will be a solid baseline foundation for future follow-up studies.

Originele taal-2English
Pagina's (van-tot)7588-7602
Aantal pagina's15
TijdschriftCancer medicine
Nummer van het tijdschrift6
Vroegere onlinedatum15-dec.-2022
StatusPublished - mrt.-2023

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