title: A twenty-year review of diagnosing and treating children with diffuse intrinsic pontine glioma in The Netherlands.
abstract: BACKGROUND
  Children with diffuse intrinsic pontine glioma (DIPG) face a dismal prognosis, with a median overall survival of 9 months. Our aims are to determine the incidence of DIPG in the Netherlands and to identify points for improvement in clinical research, a prerequisite for increasing the chance to find a cure.
  
  
  METHODS
  We performed a population-based retrospective cohort study by evaluating all children diagnosed with DIPG in the Netherlands between 1990 and 2010.
  
  
  RESULTS
  The incidence of DIPG in the Netherlands corresponds with international literature. Between 1990 and 2010, a large heterogeneity of treatment schedules was applied and only a minority of patients was included in clinical trials.
  
  
  CONCLUSIONS
  Given the rarity of DIPG, we emphasize the need for (inter-)national trials to facilitate the identification of potentially effective therapeutics in the future. This can be supported by the recent development of a European DIPG registry enabling international study collaborations.
authors.affiliation: Department of Pediatrics, Division of Oncology/Hematology, VU University Medical Center, De Boelelaan 1118, Room KTC4.027, 1081 HZ Amsterdam, The Netherlands.
authors.forename: Sophie E M
authors.initials: SE
authors.lastname: Veldhuijzen van Zanten
authors.forename: Marc H A
authors.initials: MH
authors.lastname: Jansen
authors.forename: Esther
authors.initials: E
authors.lastname: Sanchez Aliaga
authors.forename: Dannis G
authors.initials: DG
authors.lastname: van Vuurden
authors.forename: W Peter
authors.initials: WP
authors.lastname: Vandertop
authors.forename: Gertjan J L
authors.initials: GJ
authors.lastname: Kaspers
mesh_terms: D020295:Brain Stem Neoplasms / Q000175:diagnosis / Q000628:therapy*; D002648:Child; D002675:Child, Preschool; D015331:Cohort Studies; D005260:Female; D005910:Glioma / Q000175:diagnosis / Q000473:pathology / Q000628:therapy*; D006801:Humans; D008297:Male; D009426:Netherlands; D011149:Pons / Q000473:pathology*; D011379:Prognosis; D012189:Retrospective Studies; D015996:Survival Rate
keywords: brainstem tumor; chemotherapy; clinical trial; diffuse intrinsic pontine glioma; high-grade glioma; pediatric oncology; radiotherapy; treatment