Racial and Ethnic Disparities in the Research and Care of Hereditary Angioedema Patients in the United States

Sebastian Sylvestre, Timothy Craig, Oyindamola Ajewole, Sansanee Craig, Sundeep Kaur, Taha Al-Shaikhly

Research output: Contribution to journalArticlepeer-review


Background: Hereditary angioedema (HAE) affects all races and both sexes equally. Minority patients are underrepresented in clinical trials and may be at risk for additional disease burden. Objectives: To examine racial and ethnic disparities in the research and care of HAE patients. Methods: We conducted a retrospective population-based study using TriNetX Diamond Network. International Classification of Diseases, 10th Revision, Current Procedural Terminology, and RxNorm codes identified HAE patients. The proportions of White, Black, and Hispanic HAE patients were contrasted with racial and ethnic distributions of HAE patients in clinical trials. Lifetime prevalence of mental health disorders and HAE treatments was contrasted among different racial and ethnic groups. Results: A population-based search identified 2122 HAE patients. The prevalence of HAE among Black patients (1.64/100,000 patients) mirrored that of White patients (1.47/100,000 patients), whereas there was a lower HAE prevalence among Hispanic patients (0.80/100,000 patients). The demographics of the 1274 HAE patients included in phase 2/3 clinical trials differed significantly from population-based data with overrepresentation of White patients (89.9% vs 77.9%) and underrepresentation of Black patients (3.8% vs 13.6%) and Hispanic patients (1.3% vs 8.1%). Across the different racial and ethnic groups of HAE patients, the prevalence of mental health disorders was comparatively higher than among patients without HAE. Whereas depression was equally prevalent across the different HAE racial and ethnic groups, anxiety was more prevalent among White patients. Conclusions: Clinical trials for Food and Drug Administration–approved HAE medications underrepresent minority patients. Hereditary angioedema remains underdiagnosed in Hispanic patients. Other than a lower prevalence of anxiety disorders among Black patients relative to White patients, the mental health impact of HAE is equally distributed across the different racial and ethnic groups.

Original languageEnglish (US)
JournalJournal of Allergy and Clinical Immunology: In Practice
StateAccepted/In press - 2021

All Science Journal Classification (ASJC) codes

  • Immunology and Allergy


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