Improvement in diagnostic delays over time in patients with hereditary angioedema: findings from the Icatibant Outcome Survey |
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| Authors: | Andrea Zanichelli Markus Magerl Hilary J. Longhurst Werner Aberer Teresa Caballero Laurence Bouillet Anette Bygum Anete S. Grumach Jaco Botha Irmgard Andresen Marcus Maurer the IOS Study Group |
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| Affiliation: | 1.Department of Biomedical and Clinical Sciences Luigi Sacco,University of Milan,Milan,Italy;2.Department of Dermatology and Allergy, Allergie-Centrum-Charité,Charité–Universit?tsmedizin Berlin,Berlin,Germany;3.Department of Immunology,Barts Health NHS Trust,London,UK;4.Department of Dermatology and Venereology,Medical University of Graz,Graz,Austria;5.Department of Allergy, Hospital La Paz Institute for Health Research (IdiPaz),Biomedical Research Network on Rare Diseases (CIBERER, U754),Madrid,Spain;6.National Reference Centre for Angioedema, Internal Medicine Department,Grenoble University Hospital,Grenoble,France;7.Department of Dermatology and Allergy Centre,Odense University Hospital,Odense,Denmark;8.Faculdade de Medicina ABC,S?o Paulo,Brazil;9.Shire,Zug,Switzerland;10.Department of Clinical Biochemistry and Immunology, Addenbrooke’s Hospital,Cambridge University Hospitals NHS Foundation Trust,Cambridge,UK |
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| Abstract: | The objective of this analysis was to evaluate the change over time in age at first symptoms, age at diagnosis, and delay in diagnosis using data from the Icatibant Outcome Survey (IOS). Patients with a diagnosis of C1-INH-HAE who were born before the year 1990 and who were diagnosed before they reached 25 years of age were included in the analysis. Both age at diagnosis and delay in diagnosis of C1-INH-HAE appear to decline with later decade of birth, despite wide variation across the countries assessed, suggesting that improved disease awareness causes increased rates of earlier diagnosis over time. Our findings demonstrate that some patients are still experiencing long delays to diagnosis, indicating an ongoing need for improved disease awareness. |
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