Real world evidence of burden of pediatric HAE being presented at international conference

New data demonstrating the significant impact pediatric HAE has on the lives of patients and their caregivers is being presented at a conference by BioCryst, the pharmaceutical company that produces berotralstat (also known as Orlaydeyo).

The International Society for Pharmacoeconomics and Outcomes Research (ISPOR) conference, taking place in Philadelphia from 17-20 May 2026, will see the presentation of research into persistent unmet needs and the associated burden of HAE on healthcare systems. The data uses research from US insurance claims data to understand the lives of patients and their caregivers.

Dr Christina G. Kwong, Allergist and Immunologist at Phoenix Children’s Hospital, said: “Hereditary angioedema places a significant burden on children and the families caring for them, which is often underrecognized. Understanding both the healthcare utilization impact and caregiver experience through real-world research is key to improving how we care for these kids.”

Two papers will be presented during the ISPOR conference:

  • Healthcare Resource Utilization (HCRU) in Pediatric Patients with Hereditary Angioedema (HAE) in the United States: A Matched Study Using Large Insurance Claims
  • A Mixed-Methods Study to Explore the Health-Related Quality of Life Impact on Caregivers of Children with Hereditary Angioedema

(Source: BioCryst)