The Dutch Childhood Cancer Survivor Study (DCCSS-LATER) research study was set up to identify previously unrecognized late effects, to increase our understanding of etiology and pathophysiology of late effects, to evaluate novel screening tests for early detection of recognized late effects and to evaluate interventions aimed at reducing the health impact of late effects.

In the Netherlands, we have identified more than 12,000 5-year survivors treated for childhood cancer between 1963 and 2014.  6,165 survivors participated in the multidisciplinary DCCSS-LATER study part 1, which included data about childhood cancer diagnosis and treatment, health, lifestyle, and psychosocial functioning from questionnaires, and data on health outcomes from linkage to health registries. So far, 2,400 survivors (also) participated in the DCCSS-LATER study part 2 and visited the LATER outpatient clinic for additional medical data and blood sample collection.

Current research topics that we address are late mortality, burden of disease, subsequent tumors, cardiovascular toxicity, fertility, lifestyle, aging, frailty, fatigue, psychosocial health, radiation epidemiology, health care burden and evaluation of care.

Figure: Overview of the Dutch Childhood Cancer Survivor Study (DCCSS) LATER cohort and specific study parts. (A)LATER A-data includes data on patient characteristics, childhood cancer characteristics, and treatment characteristics (B) Icons depict examples of outcomes that were collected during the LATER 1 study. (C) Icons depict examples of outcomes that were collected during the LATER 2 study.