title: The Adult Life After Childhood Cancer in Scandinavia (ALiCCS) Study: Design and Characteristics.
abstract: BACKGROUND
  During the last five decades, survival of childhood cancer has increased from 25% to 80%. At the same time, however, it has become evident that survivors experience a broad range of therapy-related late adverse health effects. The aim of the Adult Life after Childhood Cancer in Scandinavia (ALiCCS) study is to investigate long-term health consequences of past and current therapies in order to improve follow-up care of survivors and to reduce treatment-related morbidity of future patients.
  
  
  METHODS
  Childhood cancer survivors were identified through the five Nordic cancer registries and a comparison cohort was established through random selection of cancer-free individuals from the civil registration systems. A unique personal identification number was used to link between different health registries. Abstraction of treatment information for a subset of survivors allows investigation of the association between the various components of cancer therapy and late occurring comorbidity.
  
  
  RESULTS
  The childhood cancer survivor cohort comprises 33,160 1-year survivors and the comparison cohort comprises 212,892 cancer free individuals from the general population. In the childhood cancer survivor cohort, all types of childhood cancer are represented including leukemia (21%), lymphoma (14%), central nervous system tumors (24%), sarcomas (5%), retinoblastoma (3%), and neuroblastoma (4%). Among the survivors, 22% have been followed beyond the age of 40 years.
  
  
  CONCLUSIONS
  The ALiCCS study constitutes a new large resource for research on late effects of childhood cancers that include all types of childhood malignancies and has followed a large proportion of the survivors well into late adulthood.
authors.affiliation: Department of Pediatrics, Aarhus University Hospital, Aarhus, Denmark.|Danish Cancer Society Research Center, Copenhagen, Denmark.
authors.forename: Peter H
authors.initials: PH
authors.lastname: Asdahl
authors.affiliation: Danish Cancer Society Research Center, Copenhagen, Denmark.
authors.forename: Jeanette F
authors.initials: JF
authors.lastname: Winther
authors.affiliation: Department of Pediatrics, Aarhus University Hospital, Aarhus, Denmark.|Danish Cancer Society Research Center, Copenhagen, Denmark.
authors.forename: Trine G
authors.initials: TG
authors.lastname: Bonnesen
authors.affiliation: Danish Cancer Society Research Center, Copenhagen, Denmark.
authors.forename: Sofie
authors.initials: S
authors.lastname: De Fine Licht
authors.affiliation: Danish Cancer Society Research Center, Copenhagen, Denmark.|Children's Hospital Iceland, Landspitali University Hospital, Reykjavik, Iceland.
authors.forename: Thorgerdur
authors.initials: T
authors.lastname: Gudmundsdottir
authors.affiliation: Department of Clinical Sciences, Lund, Cancer Epidemiology, Lund University, Sweden.
authors.forename: Harald
authors.initials: H
authors.lastname: Anderson
authors.affiliation: Finnish Cancer Registry, Helsinki, Finland.|Department of Pediatrics, Jorvi Central Hospital, Espoo, Finland.
authors.forename: Laura
authors.initials: L
authors.lastname: Madanat-Harjuoja
authors.affiliation: Faculty of Medicine, University of Iceland, Reykjavik, Iceland.|Icelandic Cancer Registry, Reykjavik, Iceland.
authors.forename: Laufey
authors.initials: L
authors.lastname: Tryggvadottir
authors.affiliation: Norwegian Cancer Registry, Oslo, Norway.
authors.forename: Milada Cvancarova
authors.initials: MC
authors.lastname: Småstuen
authors.affiliation: Department of Clinical Sciences, Pediatric Oncology and Hematology, Skåne University Hospital, Lund University, Lund, Sweden.
authors.forename: Anna Sällfors
authors.initials: AS
authors.lastname: Holmqvist
authors.affiliation: Department of Pediatrics, Aarhus University Hospital, Aarhus, Denmark.
authors.forename: Henrik
authors.initials: H
authors.lastname: Hasle
authors.affiliation: Danish Cancer Society Research Center, Copenhagen, Denmark.
authors.forename: Jørgen H
authors.initials: JH
authors.lastname: Olsen
mesh_terms: D000293:Adolescent; D000328:Adult; D002648:Child; D002675:Child, Preschool; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000401:mortality* / Q000628:therapy*; D012042:Registries; D012537:Scandinavian and Nordic Countries / Q000453:epidemiology; D017741:Survivors
keywords: cancer therapy; childhood cancer; late effects; survivorship