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ABSTRACT: 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.
SUBMITTER: Teepen JC
PROVIDER: S-EPMC10067029 | biostudies-literature | 2023 Mar
REPOSITORIES: biostudies-literature
Teepen Jop C JC Kok Judith L JL Feijen Elizabeth A M EAM Loonen Jacqueline J JJ van den Heuvel-Eibrink Marry M MM van der Pal Helena J HJ Tissing Wim J E WJE Bresters Dorine D Versluys Birgitta B Grootenhuis Martha A MA Louwerens Marloes M Neggers Sebastian J C M M SJCMM van Santen Hanneke M HM de Vries Andrica A Janssens Geert O GO den Hartogh Jaap G JG van Leeuwen Flora E FE Hollema Nynke N Streefkerk Nina N Kilsdonk Ellen E van der Heiden-van der Loo Margriet M van Dulmen-den Broeder Eline E Ronckers Cécile M CM Kremer Leontien C M LCM
Cancer medicine 20221215 6
<h4>Background</h4>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.<h4>Meth ...[more]