ArticleClinical reviews in allergy & immunology2021
The Global Registry for Hereditary Angioedema due to C1-Inhibitor Deficiency.
Article in Clinical reviews in allergy & immunology, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 17 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
17 citing papers in PubMed, 1 synthesis or guideline pooled it, 24 citations in OpenAlex.
- A COSMIN systematic review of instruments for evaluating health-related quality of life in people with Hereditary Angioedema.Health and quality of life outcomes · 2025Pooled it
- Sustained Effectiveness of Lanadelumab in Preventing Hereditary Angioedema Attacks: The ENABLE Study.Clinical and translational allergy · 2026Article
- Completion of the Icatibant Outcome Survey and What We Learned.Clinical and experimental allergy : journal of the British Society for Allergy and Clinical Immunology · 2026Article
- The 2025 WAO Guidelines for the classification, diagnosis, and treatment of hereditary angioedema, with consideration of worldwide disparities.The World Allergy Organization journal · 2026Article
- Comparison of Clinical Characteristics Between Hereditary Angioedema Patients Aged 65 Years and Older and Those Under 65: A Perspective on Elderly Patients.Life (Basel, Switzerland) · 2026Article
- Hereditary angioedema: on-demand treatment and long-term prophylaxis-a global reality.Clinical and experimental immunology · 2026Review
- Hereditary angioedema care across selected health systems in the Balkan Peninsula area: policy gaps, practice variation, and actionable recommendations.Frontiers in allergy · 2026Review
- The Chronic Angioedema Registry: what the first 2 years since the implementation of the global registry have taught us.Frontiers in allergy · 2026Article
- Hereditary angioedema diagnosis: Reflecting on the past, envisioning the future.The World Allergy Organization journal · 2025Review
- Impact of Dental Procedures on Hereditary Angioedema Attacks: An Exploratory Observational Study.Oral health & preventive dentistry · 2025Observational
- Hereditary angioedema in children: Review and practical perspective for clinical management.Pediatric allergy and immunology : official publication of the European Society of Pediatric Allergy and Immunology · 2024Review
- Genital Attacks in Hereditary Angioedema and Their Effects on Sexual Life.Medicina (Kaunas, Lithuania) · 2024Article
- Clinical Characteristics and Quality of Life in a Cohort of Polish Pediatric Patients with Hereditary Angioedema.Children (Basel, Switzerland) · 2024Article
- A Cross-Sectional Study of Quality of Life in Patients Enrolled in the Romanian Hereditary Angioedema Registry.Cureus · 2024Article
- Epidemiology and treatment of children with hereditary angioedema in Germany: A retrospective database study.Clinical and translational allergy · 2023Article
- Assessment of HAE prophylaxis transition from androgen therapy to berotralstat: A subset analysis of the APeX-S trial.The World Allergy Organization journal · 2023Article
- Current challenges and future opportunities in patient-focused management of hereditary angioedema: A narrative review.Clinical and translational allergy · 2023Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
12 authors at 7 institutions in 5 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Hereditary angioedema (HAE) is a rare condition, mostly due to genetic deficiency of complement C1 inhibitor (C1-INH). The rarity of HAE impedes extensive data collection and assessment of the impact of certain factors known to affect the course of this disabling and life-threatening disease. Establishing a global registry could assist to overcome such issues and provides valuable patient data from different countries. The HAE Global Registry is a disease-specific registry, with web-based electronic support, where data are provided by physicians and patients through a dedicated application. We collected data between January 1, 2018, and August 31, 2020. Data on 1297 patients from 29 centers in 5 European countries were collected. At least one attack was recorded for 497 patients during the study period. Overall, 1182 patients were diagnosed with HAE type 1 and 115 with type 2. At the time of database lock, 389 patients were taking long-term prophylactic medication, 217 of which were on danazol. Most recorded attacks affected the abdomen, were generally moderate in severity, and occurred in patients who were not on prophylactic treatment (70.6%, 6244/8848). The median duration of attacks was 780 min (IQR 290-1740) in patients on prophylactic medication and 780 min (IQR 300-1920) in patients not on continuous prophylactic medication. In conclusion, the establishment of a registry for C1-INH-HAE allowed collection of a large amount of data that may help to better understand the clinical characteristics of this disease. This information may enhance patient care and guide future therapeutic decisions.
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Registered trials
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.