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.

ARNOLD, Donald

McMaster University

Blood Efficiency Accelerator Program

Ontario

$29,859