[The German cohort of long-term survivors of childhood cancer. A population-based cohort in the German Childhood Cancer Registry].
Due to the considerably improved prognosis of childhood cancer, research regarding the long-term consequences has become highly valuable. The population-based German Childhood Cancer Registry forms the basis of the long-term follow-up of these patients. The cohort comprises over 25,000 patients (with malignant diseases before their 15th birthday) with a current address and who are neither deceased nor lost to follow-up. The current median age is 21 years and 500 individuals are already over 40 years old. All the long-term survivors are contacted every 5 years at the latest and are asked about possible long-term effects. Due to the continued improvement of the prognosis for childhood cancer over the years, such cohorts of long-term survivors have altered in their composition. Corresponding long-term follow-up studies can therefore not easily be compared to one another. This is illustrated by a nested case control study on the possible relationship between the occurrence of second tumors and the therapy undergone for the initial diagnosis. The cohort of long-term survivors in the German Childhood Cancer Registry is highly valuable both for research on long-term effects in Germany as well as for integration into international projects.
Deutsches Kinderkrebsregister Mainz am Institut für Medizinische Biometrie, Epidemiologie und Informatik, Universitätsmedizin der Johannes Gutenberg-Universität Mainz, 55101, Mainz, Deutschland. peter.kaatsch@unimedizin-mainz.de
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D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D005858:Germany / Q000453:epidemiology; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008875:Middle Aged; D009369:Neoplasms / Q000453:epidemiology*; D015995:Prevalence; D012042:Registries / Q000706:statistics & numerical data*; D017741:Survivors / Q000706:statistics & numerical data*; D055815:Young Adult