title: Mortality in adult congenital heart disease: are national registries reliable for cause of death?
abstract: BACKGROUND
  Statistics on cause-specific mortality are important for prognostic research. The aim of this study was to assess the utility of the national mortality registry in research on causes of death in adult patients with congenital heart disease (CHD).
  
  
  METHODS
  The CONCOR registry of over 10,000 adults with CHD was used to verify the causes of death provided by the WHO guidelines based national mortality registry, by linkage.
  
  
  RESULTS
  Of 7277 patients linked to the national mortality registry, 196 (2.4%) were recorded deceased, versus 228 deceased patients (3.1%) recorded in the CONCOR registry, during a follow-up of 25,900 patient years. Median age at death was 48.9 years. Of all deaths in the CONCOR registry, 77% had a cardiovascular origin; nearly 50% were due to progressive heart failure and arrhythmias. The national mortality registry recorded death due to progressive heart failure and arrhythmias in only 8.5%. Moreover, this registry recorded death with an 'unspecified' cause in approximately 30%, primarily containing patients who died due to progressive heart failure and arrhythmias according to their medical records.
  
  
  CONCLUSIONS
  WHO guidelines based national mortality registries lack the specificity and completeness needed for accurate research on causes of death in adult patients with CHD.
authors.affiliation: Department of Cardiology, Academic Medical Center, Amsterdam, The Netherlands.
authors.forename: A Carla
authors.initials: AC
authors.lastname: Zomer
authors.forename: Cuno S P M
authors.initials: CS
authors.lastname: Uiterwaal
authors.forename: Enno T
authors.initials: ET
authors.lastname: van der Velde
authors.forename: Jan G P
authors.initials: JG
authors.lastname: Tijssen
authors.forename: Edwin C M
authors.initials: EC
authors.lastname: Mariman
authors.forename: Carianne L
authors.initials: CL
authors.lastname: Verheugt
authors.forename: Ilonca
authors.initials: I
authors.lastname: Vaartjes
authors.forename: Petronella G
authors.initials: PG
authors.lastname: Pieper
authors.forename: Folkert J
authors.initials: FJ
authors.lastname: Meijboom
authors.forename: Diederick E
authors.initials: DE
authors.lastname: Grobbee
authors.forename: Barbara J M
authors.initials: BJ
authors.lastname: Mulder
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001145:Arrhythmias, Cardiac / Q000401:mortality; D002423:Cause of Death; D005260:Female; D006330:Heart Defects, Congenital / Q000401:mortality*; D006333:Heart Failure / Q000401:mortality; D006801:Humans; D008297:Male; D008875:Middle Aged; D009426:Netherlands / Q000453:epidemiology; D012042:Registries; D055815:Young Adult