Epidemiology and treatment of children with hereditary angioedema in Germany: A retrospective database study

Research output: Contribution to journalResearch articleContributedpeer-review


  • Freerk Prenzel - , University Hospital Leipzig (Joint first author)
  • Susanne Abraham - , Department of Dermatology, University Allergy Centre (Joint first author)
  • Christoph Hirche - , Takeda Pharma Vertrieb GmbH & Co. (Author)
  • Gerrit Müller - , Takeda Pharma Vertrieb GmbH & Co. (Author)
  • Stephan Kaiser - , Takeda Pharma Vertrieb GmbH & Co. (Author)
  • Leonarda Serdani-Neuhaus - , Takeda Pharma Vertrieb GmbH & Co. (Author)
  • Rebecca Zingel - , Center for Clinical Epidemiology and Longitudinal Studies (CELOS) (Author)
  • Inmaculada Martinez-Saguer - , Innsbruck Medical University (Author)


BACKGROUND: Hereditary angioedema (HAE) is a potentially life-threatening inherited disease that causes recurrent, serious, and debilitating episodes of swelling. While evidence has improved in adult patients, data on the epidemiology and treatment of pediatric patients with HAE remain very limited. The aim of this study was to determine the incidence and prevalence of pediatric patients with HAE aged <12 years, as well as treatment patterns, co-medication, and specialties involved.

METHODS: In this retrospective study (2016-2021), the German IQVIATM pharmacy claims (LRx) database was used to analyze prescriptions of HAE-specific treatments and co-medications.

RESULTS: We found an HAE prevalence in pediatric patients aged <12 years of 2.51:100,000 and a 12-month prevalence of up to 1.02:100,000 between 2016 and 2021. Most HAE treatments were prescribed by outpatient clinics and pediatricians, with an increasing proportion of icatibant as an on-demand treatment and low rates of long-term prophylaxis (LTP). The prescription rate of analgesics as the most common co-medication decreased notably after HAE diagnosis.

CONCLUSION: Our findings provide insights into the epidemiology and current pediatric HAE treatment landscape in Germany. The obtained HAE prevalence in pediatric patients aged <12 years was even higher than the previously reported average of overall cohorts, whereas the LTP rate was low, which might indicate an unmet need for newer LTP treatment options in pediatric patients.


Original languageEnglish
Article numbere12313
JournalClinical and translational allergy : CTA
Issue number11
Publication statusPublished - Nov 2023

External IDs

Scopus 85176440848
ORCID /0000-0001-7457-6481/work/147674455
PubMed 38006382