ArticleBMC dermatology2012
The hereditary angioedema burden of illness study in Europe (HAE-BOIS-Europe): background and methodology.
Article in BMC dermatology, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
19 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Psychology and hereditary angioedema: A systematic review.Allergy and asthma proceedings · 2021Pooled it
- Burden of disease in adult patients with hereditary angioedema: results from a multinational survey.Orphanet journal of rare diseases · 2026Article
- The International/Canadian hereditary angioedema guideline.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2026Review
- Patient outcomes associated with subcutaneous C1INH prophylaxis for hereditary angioedema: a retrospective analysis.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2023Article
- Psychometric study of the SF-36v2 in hereditary angioedema due to C1 inhibitor deficiency (C1-INH-HAE).Orphanet journal of rare diseases · 2022Article
- Time Trade-Off Utilities for Hereditary Angioedema Health and Caregiver States.PharmacoEconomics - open · 2022Article
- A catalog of the genetic causes of hereditary angioedema in the Canary Islands (Spain).Frontiers in immunology · 2022Article
- First Census of Patients with Hereditary Angioedema in the Canary Islands.Journal of clinical medicine · 2021Article
- Psychological processes in the experience of hereditary angioedema in adult patients: an observational study.Orphanet journal of rare diseases · 2021Observational
- Prophylactic Treatment in Hereditary Angioedema Is Associated with Reduced Anxiety in Patients in Leipzig, Germany.International archives of allergy and immunology · 2021Article
- The International/Canadian Hereditary Angioedema Guideline.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2019Review
- Clinical Features of Hereditary and Mast Cell-mediated Angioedema Focusing on the Differential Diagnosis in Japanese Patients.Internal medicine (Tokyo, Japan) · 2018Article
- The Humanistic, Societal, and Pharmaco-economic Burden of Angioedema.Clinical reviews in allergy & immunology · 2016Review
- Estimation of EuroQol 5-Dimensions health status utility values in hereditary angioedema.Patient preference and adherence · 2016Article
- Development and content validity testing of a patient-reported outcomes questionnaire for the assessment of hereditary angioedema in observational studies.Health and quality of life outcomes · 2015Observational
- Differential Diagnosis and Management Issues of Idiopathic Angiooedema and their Resolution.Journal of critical care medicine (Universitatea de Medicina si Farmacie din Targu-Mures) · 2015Review
- Socioeconomic burden of hereditary angioedema: results from the hereditary angioedema burden of illness study in Europe.Orphanet journal of rare diseases · 2014Article
- Canadian hereditary angioedema guideline.Allergy, asthma, and clinical immunology : official journal of the Canadian Society of Allergy and Clinical Immunology · 2014Article
- In pursuit of excellence: an integrated care pathway for C1 inhibitor deficiency.Clinical and experimental immunology · 2013Article
Corrections and comments
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Authors and funding
8 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundHereditary angioedema (HAE) is a rare but serious disease marked by swelling attacks in the extremities, face, trunk, airway, or abdominal areas that can be spontaneous or the result of trauma and other triggers. It can be life-threatening due to the risk of asphyxiation. While there have been major advancements in our understanding of the immunogenetics of HAE, there are significant gaps in the literature regarding understanding of the humanistic and economic impact of the disease, particularly in Europe. The purpose of the HAE Burden of Illness Study-Europe (HAE-BOIS-Europe), the development and methodology of which is described here, is to better understand the management and impact of HAE from the patient perspective in Europe. METHODS/
designThis is a cross-sectional study in which retrospective data were also collected being conducted in Denmark, Germany and Spain. The study is open to patients ages 12 and older with a diagnosis of HAE-I or HAE-II. Data collection includes: (i) a survey on individuals' health care resource use, direct and indirect medical costs, impact on work and school, treatment satisfaction, and emotional functioning (via the Hospital Anxiety and Depression Scale); and (ii) one-on-one interviews to collect detailed descriptive data and patient testimonials on the impact of HAE on patients' health-related quality of life. DISCUSSION: The present manuscript describes the development and plans for implementing a multi-country European study with the aim of characterizing the humanistic and economic burden of HAE from the patient perspective. This study will help raise awareness of HAE as a rare but debilitating condition with wide-ranging impacts.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.