The Canadian Hemophilia Registry was formed in 1988 by the Canadian Hemophilia Clinic Directors Group to enumerate the number of individuals with hemophilia A and B. The registry continues under the successor organization, the Association of Hemophilia Clinic Directors of Canada. It facilitates a number of the organization's research and administrative objectives.
The registry has been anonymous from the outset. No names are used. Clinic directors provide selected information to the registry, and individuals are identified by a combination of specific factor deficiency, date of birth and an Extra Identifier, the latter consisting of four letters derived from the person's name. Neither Social Insurance numbers nor Health Card Numbers are used, the latter because they change if individuals move to different provinces.
The basic data that are collected on each individual are: Factor deficiency, severity (mild, moderate or severe in the case of hemophilia), type (in the case of von Willebrand disease), clinic, province, date of birth, HIV and HCV sero-status, and Extra Identifier. Individuals are assigned a 'CHR number' which the individual retains for life. This CHR number is used to retain anonymity of blood samples and data collection forms used in research, and to accompany blood product utilization data that is exported electronically from the CHARMS' data program in each clinic.
Publications of the registry are listed elsewhere on this website.
The registry was expanded in 2003 to accommodate a 'von Willebrand' registry, and in 2004 statistics from the Rare Inherited Bleeding Disorders Registry were incorporated.
In 2007 the collection of data relating to HIV and HCV status was discontinued.
(1) The Canadian Hemophilia Assessment and Resource Management System is a database software program that is installed in all Canadian hemophilia clinics. For a full description see www.ahcdc.ca.