Improvement in diagnostic delays over time in patients with hereditary angioedema: findings from the Icatibant Outcome Survey

被引：27

作者：

Zanichelli, Andrea ^{[1
]}

Magerl, Markus ^{[2
]}

Longhurst, Hilary J. ^{[3
,10
]}

Aberer, Werner ^{[4
]}

Caballero, Teresa ^{[5
]}

Bouillet, Laurence ^{[6
]}

Bygum, Anette ^{[7
]}

Grumach, Anete S. ^{[8
]}

Botha, Jaco ^{[9
]}

Andresen, Irmgard ^{[9
]}

Maurer, Marcus ^{[2
]}

机构：

[1] Univ Milan, ASST Fatebenefratelli Sacco, Dept Biomed & Clin Sci Luigi Sacco, Milan, Italy

[2] Charite Univ Med Berlin, Allergie Ctr Charite, Dept Dermatol & Allergy, Berlin, Germany

[3] Barts Hlth NHS Trust, Dept Immunol, London, England

[4] Med Univ Graz, Dept Dermatol & Venereol, Graz, Austria

[5] Hosp La Paz Inst Hlth Res IdiPaz, Biomed Res Network Rare Dis CIBERER, Dept Allergy, U754, Madrid, Spain

[6] Grenoble Univ Hosp, Natl Reference Ctr Angioedema, Internal Med Dept, Grenoble, France

[7] Odense Univ Hosp, Dept Dermatol & Allergy Ctr, Odense, Denmark

[8] Fac Med ABC, Sao Paulo, Brazil

[9] Shire, Zug, Switzerland

[10] Cambridge Univ Hosp NHS Fdn Trust, Addenbrookes Hosp, Dept Clin Biochem & Immunol, Cambridge, England

来源：

CLINICAL AND TRANSLATIONAL ALLERGY | 2018年 / 8卷

关键词：

Hereditary angioedema; HAE; C1-INH-HAE; Diagnosis; Delay in diagnosis; BURDEN;

D O I：

10.1186/s13601-018-0229-4

中图分类号：

R392 [医学免疫学];

学科分类号：

100102 ;

摘要：

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.

引用

页数：5

共 50 条

[1] Improvement in hereditary angioedema diagnosis: findings from the Icatibant Outcome Survey
Zanichelli, A.
Magerl, M.
Longhurst, H. J.
Aberer, W.
Caballero, T.
Bouillet, L.
Bygum, A.
Grumach, A. S.
Fabien, V
Andresen, I
Maurer, M.
[J]. ALLERGY, 2016, 71 : 242 - 243
[2] IMPROVEMENT IN HEREDITARY ANGIOEDEMA DIAGNOSIS: FINDINGS FROM THE ICATIBANT OUTCOME SURVEY
Zanichelli, A.
Magerl, M.
Longhurst, H.
Aberer, W.
Bygum, A.
Caballero, T.
Bouillet, L.
Grumach, A.
Perrin, A.
Andresen, I.
Maurer, M.
[J]. ANNALS OF ALLERGY ASTHMA & IMMUNOLOGY, 2016, 117 (05) : S2 - S3
[3] Icatibant Treatment of Acute Attacks in Pediatric Patients With Hereditary Angioedema: Findings from the Icatibant Outcome Survey
Andresen, Irmgard
Longhurst, Hilary
Aberer, Werner
Bouillet, Laurence
Caballero, Teresa
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Botha, Jaco
Zanichelli, Andrea
[J]. JOURNAL OF ALLERGY AND CLINICAL IMMUNOLOGY, 2019, 143 (02) : AB44 - AB44
[4] Characterisation of hereditary angioedema attacks requiring reinjection of icatibant: findings from the icatibant outcome survey
Aberer, W.
Longhurst, H.
Bouillet, L.
Caballero, T.
Fabien, V
Zanichelli, A.
Maurer, M.
Andresen, I
[J]. ALLERGY, 2016, 71 : 86 - 86
[5] Characterization Of Hereditary Angioedema Attacks Requiring Reinjection Of Icatibant: Findings From The Icatibant Outcome Survey
Andresen, Irmgard
Longhurst, Hilary J.
Bouillet, Laurence
Caballero, Teresa
Zanichelli, Andrea
Maurer, Marcus
Grumach, Anete S.
Bygum, Anette
Botha, Jaco
Aberer, Werner
[J]. JOURNAL OF ALLERGY AND CLINICAL IMMUNOLOGY, 2018, 141 (02) : AB53 - AB53
[6] The Icatibant Outcome Survey: 10 years of experience with icatibant for patients with hereditary angioedema
Maurer, Marcus
Aberer, Werner
Caballero, Teresa
Bouillet, Laurence
Grumach, Anete S.
Botha, Jaco
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[J]. CLINICAL AND EXPERIMENTAL ALLERGY, 2022, 52 (09): : 1048 - 1058
[7] Hereditary angioedema presents in childhood but is diagnosed in adulthood findings from the Icatibant outcome survey
Longhurst, H.
Aberer, W.
Bouillet, L.
Caballero, T.
Bygum, A.
Grumach, A. S.
Fabien, V
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[J]. ALLERGY, 2016, 71 : 243 - 243
[8] Comparing acquired angioedema with hereditary angioedema (types I/II): findings from the Icatibant Outcome Survey
Longhurst, H. J.
Zanichelli, A.
Caballero, T.
Bouillet, L.
Aberer, W.
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Fain, O.
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[J]. CLINICAL AND EXPERIMENTAL IMMUNOLOGY, 2017, 188 (01): : 148 - 153
[9] Breakthrough attacks in patients with hereditary angioedema receiving long-term prophylaxis are responsive to icatibant: findings from the Icatibant Outcome Survey
Werner Aberer
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Laurence Bouillet
Andrea Zanichelli
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Hilary J. Longhurst
Amandine Perrin
Irmgard Andresen
[J]. Allergy, Asthma & Clinical Immunology, 13
[10] Breakthrough attacks in patients with hereditary angioedema receiving long-term prophylaxis are responsive to icatibant: findings from the Icatibant Outcome Survey
Aberer, Werner
Maurer, Marcus
Bouillet, Laurence
Zanichelli, Andrea
Caballero, Teresa
Longhurst, Hilary J.
Perrin, Amandine
Andresen, Irmgard
[J]. ALLERGY ASTHMA AND CLINICAL IMMUNOLOGY, 2017, 13

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