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A Retrospective Analysis of Long-Term Prophylaxis with Berotralstat in Patients with Hereditary Angioedema and Acquired C1-Inhibitor Deficiency—Real-World Data
Hereditary angioedema (HAE) and acquired C1-inhibitor deficiency (AAE-C1-INH) are orphan diseases. Berotralstat is a recently licensed long-term...
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An international survey assessing the effects of the duration of attack-free period on health-related quality of life for patients with hereditary angioedema
BackgroundHereditary angioedema (HAE) is characterized by unpredictable and often severe cutaneous and mucosal swelling that affects the extremities,...
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Epidemiology, economic, and humanistic burden of hereditary angioedema: a systematic review
BackgroundThis systematic study aims to assess the global epidemiologic, economic, and humanistic burden of illness associated with all types of...
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Content validation and psychometric evaluation of the Angioedema Quality of Life Questionnaire for hereditary angioedema
BackgroundThere is considerable burden of illness in hereditary angioedema (HAE). However, instruments to assess health-related quality of life...
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Patient outcomes associated with subcutaneous C1INH prophylaxis for hereditary angioedema: a retrospective analysis
BackgroundReal-world data on subcutaneous C1INH (C1INH[SC]) usage and patient-level impacts on hereditary angioedema (HAE)-related outcomes and...
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Psychometric study of the SF-36v2 in hereditary angioedema due to C1 inhibitor deficiency (C1-INH-HAE)
BackgroundThe generic 36-item Short-Form Health Survey (SF-36v2) has been used to assess health related quality of life in adult patients with...
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Long-term prophylaxis with lanadelumab for HAE: authorization for temporary use in France
BackgroundHereditary angioedema (HAE) is associated with a heavy burden of illness.
ObjectiveTo evaluate use of lanadelumab in a French...
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Quality of life in patients with allergic and immunologic skin diseases: in the eye of the beholder
Allergic and immunologic skin diseases negatively impact the quality of life (QoL) of affected patients with detrimental consequences. Nonetheless,...
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Assessment and management of disease burden and quality of life in patients with hereditary angioedema: a consensus report
BackgroundHereditary angioedema (HAE) is a rare disease characterized by unpredictable, potentially life-threatening attacks, resulting in...
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Letting the patients speak: an in-depth, qualitative research-based investigation of factors relevant to health-related quality of life in real-world patients with hereditary angioedema using subcutaneous C1 inhibitor replacement therapy
BackgroundWhile many studies of effective hereditary angioedema (HAE) therapy have demonstrated improved health-related quality of life (HRQoL) using...
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Psychosocial burden of type 1 and 2 hereditary angioedema: a single-center Canadian cohort study
BackgroundHereditary angioedema (HAE) is a rare but serious disorder associated with a multifaceted burden of illness including a high prevalence of...
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How Angioedema Quality of Life Questionnaire Can Help Physicians in Treating C1-Inhibitor Deficiency Patients?
The Angioedema Quality of Life Questionnaire (AE-QoL) is an angioedema (AE)-specific validated questionnaire, which surveys the quality of life of...
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Long-term health-related quality of life in patients treated with subcutaneous C1-inhibitor replacement therapy for the prevention of hereditary angioedema attacks: findings from the COMPACT open-label extension study
BackgroundLong-term prophylaxis with subcutaneous C1-inhibitor (C1-INH[SC]; HAEGARDA, CSL Behring) in patients with hereditary angioedema (HAE) due...
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Clinical characteristics and burden of illness in patients with hereditary angioedema: findings from a multinational patient survey
BackgroundHereditary angioedema (HAE) is a rare, debilitating, genetic disease characterized by unpredictable, recurrent, and potentially fatal...
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Hereditary angioedema in Spain: medical care and patient journey
BackgroundHereditary angioedema due to C1 inhibitor deficiency (HAE-C1INH) is a genetic rare disease characterized by recurrent, transient and...
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Long-term Prophylaxis with Androgens in the management of Hereditary Angioedema (HAE) in emerging countries
Hereditary angioedema (HAE) is a rare autosomal dominant genetic disease characterized by repetitive subcutaneous or submucosal angioedema,...
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The symptom experience of hereditary angioedema (HAE) patients beyond HAE attacks: literature review and clinician interviews
BackgroundHereditary angioedema (HAE) is a genetic disorder characterized by re-occurring swelling episodes called “attacks,” usually in the limbs,...
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Expert consensus on prophylactic treatment of hereditary angioedema
Hereditary angioedema (HAE) is a chronic, genetic condition which severely impacts those afflicted with intermittent recurrent vascular edema in...