A study to understand C1 esterase inhibitor distribution and patterns of use in Canada

Hereditary angiodema (HAE) is a disorder caused by a deficiency or dysfunction of a protein in the blood called C1 Esterase Inhibitor (C1-INH) and characterized by attacks of swelling in the throat, arms, legs, face and intesntinal tract. Throat swelling is a life threatening medical emergency. C1-INH is a product derived from blood that was approved by Health Canada to treat HAE since 2010. In 2014, use of C1-INH has expanded to include the prevention of HAE attacks; hence, the volume of C1-INH used and cost has increased dramaticaly. Canada does not have a registry of patients with HAE causing an information gap: how many patients with HAW are using C1-INH; the patients' geographic locations; how often C1-INH is used for attach prevention; and, the dose and frequency of C1-INH use.
In this project, this missing information will be gathered from hospital who receive C1-INH from Canadian Blood Services (CBS), helping CBS to forecast future C1-INH demand and cost. This is also the first step that could lead to a registry of patients with HAE. A HAE registry would help phyiscians and patients manage HAW, minimize attacks, as well as optimize and track product use.
Principal Investigator / Supervisor
ARNOLD, Donald
Co-Investigator(s) / Trainee
HEDDLE, Nancy KEITH, Paul WASERMAN, SUSAN WEBERT, Kathryn NING, Shuoyan SHIH, Andrew MORRISON, Doug YAN, Matthew
McMaster University
Blood Efficiency Accelerator Program
Total Amount Awarded
Project Start Date
Project End Date