ArticleThe journal of allergy and clinical immunology. In practice2021
Racial and Ethnic Disparities in the Research and Care of Hereditary Angioedema Patients in the United States.
Article in The journal of allergy and clinical immunology. In practice, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 3 of them syntheses that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
13 citing papers in PubMed, 3 syntheses or guidelines pooled it, 28 citations in OpenAlex.
- International Guideline on the Diagnosis and Management of Pediatric Patients With Hereditary Angioedema.Allergy · 2026Guideline
- Prevalence and Incidence of Hereditary Angioedema: A Systematic Literature Review.International archives of allergy and immunology · 2026Pooled it
- Epidemiology, economic, and humanistic burden of hereditary angioedema: a systematic review.Orphanet journal of rare diseases · 2024Pooled it
- Choosing real-world data for clinical and epidemiological research: methodological lessons from NHIRD and TriNetX-A narrative review.Annals of medicine · 2026Review
- The patient experience of hereditary angioedema: findings from a racially diverse sample of adult patients.Orphanet journal of rare diseases · 2026Article
- Impact of injectable HAE on-demand treatments on health-related quality of life: a patient and caregiver interview study.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2025Article
- Evaluating large language model performance to support the diagnosis and management of patients with primary immune disorders.The Journal of allergy and clinical immunology · 2025Article
- A comprehensive review of methodologies and application to use the real-world data and analytics platform TriNetX.Frontiers in pharmacology · 2025Review
- Real-world experience of hereditary angioedema (HAE) in Mexico: A mixed-methods approach to describe epidemiology, diagnosis, and treatment patterns.The World Allergy Organization journal · 2023Article
- Content validation and psychometric evaluation of the Angioedema Quality of Life Questionnaire for hereditary angioedema.Journal of patient-reported outcomes · 2023Article
- Racial and ethnic disparities in biologic prescriptions for asthma in the United States.The journal of allergy and clinical immunology. In practice · 2022Article
- Effectiveness and safety of lanadelumab in ethnic and racial minority subgroups of patients with hereditary angioedema: results from phase 3 studies.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2022Article
- Article
Corrections and comments
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
Abstract
backgroundHereditary 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.
objectivesTo examine racial and ethnic disparities in the research and care of patients with HAE.
methodsWe conducted a retrospective population-based study using TriNetX Diamond Network. International Classification of Diseases, 10th Revision, Current Procedural Terminology, and RxNorm codes identified patients with HAE. The proportions of White, Black, and Hispanic patients with HAE were contrasted with racial and ethnic distributions of patients with HAE in clinical trials. Lifetime prevalence of mental health disorders and HAE treatments was contrasted among different racial and ethnic groups.
resultsA population-based search identified 2122 patients with HAE. 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 patients with HAE 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 patients with HAE, 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.
conclusionsClinical 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.
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Registered trials
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