       Document 0257
 DOCN  M95B0257
 TI    The Canadian Hemophilia Registry as the basis for a national system for
       monitoring the use of factor concentrates.
 DT    9511
 AU    Walker I; Pai M; Akabutu J; Ritchie B; Growe G; Poon MC; Card R; Ali K;
       Israels S; Teitel J; et al; Association of Hemophilia Clinic Directors
       of Canada, Toronto,; Ontario.
 SO    Transfusion. 1995 Jul;35(7):548-51. Unique Identifier : AIDSLINE
       MED/95357875
 AB    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. 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. 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. CONCLUSION: The CHR includes the
       vast majority of factor concentrate users and is therefore ideal as the
       basis for a national monitoring system.
 DE    Adolescence  Adult  Aged  Blood Coagulation Factors/*ANALYSIS
       Canada/EPIDEMIOLOGY  Child  Child, Preschool  Female
       Hemophilia/BLOOD/COMPLICATIONS/*EPIDEMIOLOGY  Human  HIV
       Infections/EPIDEMIOLOGY/ETIOLOGY  Infant  Infant, Newborn  Male  Middle
       Age  Prevalence  *Registries  Support, Non-U.S. Gov't  JOURNAL ARTICLE

       SOURCE: National Library of Medicine.  NOTICE: This material may be
       protected by Copyright Law (Title 17, U.S.Code).

