Demographic and clinical characteristics of patients with hereditary angioedema in Canada Academic Article uri icon

  • Overview
  • Research
  • Identity
  • Additional Document Info
  • View All


  • Background

    Data on the clinical and demographic features of Canadian patients with hereditary angioedema (HAE) are lacking.


    To describe the clinical and demographic features in a large Canadian HAE cohort and compare them with patients with HAE in other countries.


    An online questionnaire was distributed to the members of 2 Canadian HAE patient groups to collect information on demographics and HAE clinical characteristics. All participants 18 years of age or older with HAE type I or II were eligible. Frequency, location, prodromes, and triggers of HAE attacks, including types of HAE treatment, were characterized.


    Among the 90 participants who completed the online survey, 57% self-identified as having HAE type 1 and 26% HAE type II. The average diagnostic delay was 11 years. In the preceding 6 months, 24% of the participants had no attacks and 35% experienced greater than 5 attacks. The most frequently affected regions of the body were the abdomen (83%), arms orlegs (63%), face (41%), and larynx or throat (41%). Approximately 87% of the participants reported having access to C1 inhibitor at home, and 69% reported using it for long-term prophylaxis.


    Canadian patients with HAE share common clinical characteristics with patients with HAE in other countries. They had a delay in HAE diagnosis and a high burden of disease, as indicated by the high frequency of attacks in the preceding 6 months. This study provides a better understanding of the demographic and clinical characteristics of Canadian patients with HAE.


  • Lee, Erika Yue
  • Hsieh, Jane
  • Caballero, Teresa
  • McCusker, Christine
  • Kanani, Amin
  • Lacuesta, Gina
  • Borici-Mazi, Rozita
  • Waserman, Susan
  • Betschel, Stephen

publication date

  • January 2022