title: The Canadian Hemophilia Registry as the basis for a national system for monitoring the use of factor concentrates.
abstract: BACKGROUND
  Canada's publicly funded blood system has recently introduced high-purity concentrates as the standard treatment for individuals with hemophilia. The added cost and the need to document patient outcomes have prompted the consideration of a national blood product monitoring system.
  
  
  METHODS
  This study investigates the suitability of the Canadian Hemophilia Registry (CHR) as the basis of such a monitoring system by assessing the degree to which it represents users of factor concentrates.
  
  
  RESULTS
  Currently, there are 1978 individuals registered with the CHR, of whom 1594 (81%) have hemophilia A and 384 (19%) have hemophilia B. The total prevalence is 7.2 per 10(5) population, with the prevalence of severe cases being 2.3 per 10(5). This overall prevalence is similar to that seen in other countries with national registries. The CHR national prevalence also compares favorably with that in the province of Quebec, where registration of users of blood products is compulsory. The CHR figures indicate that the number of persons currently infected with human immunodeficiency virus, both alive and dead, is 652, which is similar to the number of applicants (658) to the federal government's assistance program. The registry is stable, and the number of persons with severe cases, other than young children, newly registered or lost to follow-up during the last 2 years is very small.
  
  
  CONCLUSIONS
  The CHR includes the vast majority of factor concentrate users and is therefore ideal as the basis for a national monitoring system.
authors.affiliation: Association of Hemophilia Clinic Directors of Canada, Toronto, Ontario.
authors.forename: I
authors.initials: I
authors.lastname: Walker
authors.forename: M
authors.initials: M
authors.lastname: Pai
authors.forename: J
authors.initials: J
authors.lastname: Akabutu
authors.forename: B
authors.initials: B
authors.lastname: Ritchie
authors.forename: G
authors.initials: G
authors.lastname: Growe
authors.forename: M C
authors.initials: MC
authors.lastname: Poon
authors.forename: R
authors.initials: R
authors.lastname: Card
authors.forename: K
authors.initials: K
authors.lastname: Ali
authors.forename: S
authors.initials: S
authors.lastname: Israels
authors.forename: J
authors.initials: J
authors.lastname: Teitel
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001779:Blood Coagulation Factors / Q000032:analysis*; D002170:Canada / Q000453:epidemiology; D002648:Child; D002675:Child, Preschool; D005260:Female; D015658:HIV Infections / Q000453:epidemiology / Q000209:etiology; D006467:Hemophilia A / Q000097:blood / Q000150:complications / Q000453:epidemiology*; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D008875:Middle Aged; D015995:Prevalence; D012042:Registries
chemical_list: D001779:Blood Coagulation Factors