Long-term prophylaxis is clinically beneficial in preventing hereditary angioedema (HAE) attacks, according to a study published in Allergy, Asthma & Clinical Immunology. 

HAE is characterized by recurring angioedema episodes that can be debilitating. Prophylactic care, both short and long term, includes standard treatment regimens used in preventing these episodes. Some countries employ androgens as prophylaxis, which can achieve adequate disease control in some patients. 

Recent therapeutic advancements have made available plasma-derived C1 inhibitor concentrate and plasma kallikrein inhibitors. These therapeutics can significantly reduce angioedema attack rates; however, their main disadvantage is that they require frequent intravenous/subcutaneous administration. In addition, their high costs are prohibitive. 

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The authors of the study sought to better understand patient characteristics, treatment efficiency, and healthcare resource utilization in global HAE care. They conducted a retrospective, multicenter study encompassing 12 HAE clinical centers across 6 developed countries: Canada, the United States, the United Kingdom, Germany, Italy, and Australia.

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The research team extracted data from patient medical records. They defined the index date as the date of the first HAE-related visit at a clinical center, while the baseline period was defined as the 6 months following the index date. The observation period began from the index date until the last clinical visit, which could be the end of the study period, enrollment in a clinical study for an investigational HAE therapy, last clinical visit, or death. 

Two hundred twenty-five patients with HAE were included in the study. Regarding treatment, 85.8% of patients were prescribed on-demand treatment, 24% had at least 1 prescription for short-term prophylaxis, and 53.8% were on long-term prophylaxis. Androgens were the most commonly prescribed type of long-term prophylaxis. Patients who were on long-term prophylaxis had a significantly lower rate of angioedema attacks compared with those who were not prescribed long-term prophylaxis. In terms of healthcare resource utilization, 51.1% of patients had a clinical visit related to HAE; 38.7% had visited the emergency department due to an angioedema episode.

“A follow-up study would be beneficial to understand the impact of current guidelines and the availability of new therapies,” the authors concluded. 


Mendivil J, DerSarkissian M, Banerji A, et al. A multicenter chart review of patient characteristics, treatment, and outcomes in hereditary angioedema: unmet need for more effective long-term prophylaxisAllergy Asthma Clin Immunol. Published online May 29, 2023. doi:10.1186/s13223-023-00795-2