The Canadian hemophilia registry as the basis for a national system for monitoring the use of factor concentrates.
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.
Study Design and 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.
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 105 population, with the prevalence of severe cases being 2.3 per 105.
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 CHR includes the vast majority of factor concentrate users and is therefore ideal as the basis for a national monitoring system.
Mots-clés Pascal : Facteur coagulation, Concentrat, Utilisation, Epidémiologie, Homme, Canada, Amérique du Nord, Amérique, Constituant sang, Transfusion
Mots-clés Pascal anglais : Coagulation factor, Concentrate, Use, Epidemiology, Human, Canada, North America, America, Blood product, Transfusion
Notice produite par :
Inist-CNRS - Institut de l'Information Scientifique et Technique
Cote : 95-0439776
Code Inist : 002B27D01. Création : 01/03/1996.