Evidence map›Paper›PMID 40722187›Full record

ArticleOrphanet journal of rare diseases2025

Unmet needs in hereditary angioedema: an international survey of physicians.

Thomas Buttgereit, Felix Aulenbacher, Adil Adatia, Carolina Vera Ayala, Maryam Ali Al-Nesf, Sabine Altrichter, Mohamed Abuzakouk, Mona Al-Ahmad, Ramzy Mohammed Ali, Alejandro Berardi and 51 more

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Article in Orphanet journal of rare diseases, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers.

0numbers the graph read from it
0cells of the map it votes in
13citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

13 citing papers in PubMed.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

61 authors.

Thomas ButtgereitDermatology and Allergy, Institute of Allergology, Charité-Universitätsmedizin Berlin, Freie Universität Berlin and Humboldt-Universität Zu Berlin, Hindenburgdamm 27, 12203, Berlin, Germany. thomas.buttgereit@charite.de.ORCID http://orcid.org/0000-0002-9389-1767
Felix AulenbacherDermatology and Allergy, Institute of Allergology, Charité-Universitätsmedizin Berlin, Freie Universität Berlin and Humboldt-Universität Zu Berlin, Hindenburgdamm 27, 12203, Berlin, Germany.
Adil AdatiaDivision of Pulmonary Medicine, Department of Medicine, University of Alberta, Edmonton, AB, Canada.
Carolina Vera AyalaDermatology and Allergy, Institute of Allergology, Charité-Universitätsmedizin Berlin, Freie Universität Berlin and Humboldt-Universität Zu Berlin, Hindenburgdamm 27, 12203, Berlin, Germany.
Maryam Ali Al-NesfAllergy and Immunology Division, Department of Medicine, Hamad Medical Corporation, Doha, Qatar.
Sabine AltrichterDepartment of Dermatology and Venereology, Kepler University Hospital, Linz, Austria.
Mohamed AbuzakoukCleveland Clinic, Cleveland, OH, USA.
Mona Al-AhmadDepartment of Microbiology, College of Medicine, Kuwait University, Kuwait City, Kuwait.
Ramzy Mohammed AliAllergy and Immunology Division, Department of Medicine, Hamad Medical Corporation, Doha, Qatar.
Alejandro BerardiInstituto de Asma, Alergia y Enfermedades Respiratorias, GA²LEN UCARE Urticaria Centers of Reference and Excellence, GA²LEN ACARE Angioedema Centers of Reference and Excellence, Corrientes, Argentina.
Isabelle Boccon-GibodFrench National Reference Center for Angioedema (CREAK) and ACARE, Internal Medicine Department, Grenoble Alpes University Hospital (CHUGA), Grenoble, France.
Laurence BouilletGrenoble Alpes University, T-RAIG Unit, CNRS, UMR 5525, TIMC, French National Reference Center for Angioedema (CREAK), Internal Medicine Department, Grenoble Alpes University Hospital, Grenoble, France.
Luisa BrussinoImmunology and Allergy Department, AO Ordine Mauriziano, Department of Medical Science, University of Turin, Turin, Italy.
Marko BarešićDivision of Clinical Immunology and Rheumatology, Department of Internal Medicine, School of Medicine, University Hospital Center Zagreb, Zagreb, Croatia.
Paula J BusseDivision of Clinical Immunology, Department of Medicine, Mount Sinai, New York, NY, USA.
Stephen D BetschelDivision of Clinical Immunology and Allergy, Department of Medicine, University of Toronto, Toronto, ON, Canada.
Herberto Chong-NetoDepartment of Pediatrics, Federal University of Paraná, Curitiba, Brazil.
Oscar Calderón LlosaACARE Center Clínica, SANNA El Golf, Lima, Peru.
Timothy J CraigVinmec International Hospital, Times City, Hanoi, Vietnam.
Anthony D DorrDepartment of Clinical Immunology, Barts Health NHS Trust, London, UK.
Sérgio Duarte Dortas JuniorServiço de Imunologia, Hospital Universitário Clementino Fraga Filho (HUCFF-UFRJ), Rio de Janeiro, Brazil.
Daria FominaMoscow City Clinical and Research Center of Allergology and Immunology, City Clinical Hospital 52, Moscow, Russia.
Henriette FarkasHungarian Angioedema Center of Reference and Excellence, Department of Internal Medicine and Haematology, Semmelweis University, Budapest, Hungary.
Jie Shen FokDepartment of Respiratory Medicine, Box Hill Hospital, Melbourne, Australia.
Anete S GrumachClinical Immunology, Faculty of Medicine, Centro Universitario FMABC, Santo Andre, Brazil.
Jens GreveDepartment of Otorhinolaryngology, Head and Neck Surgery, Ulm University Medical Center, Ulm, Germany.
Mar GuilarteDepartment of Allergy, Angioedema Reference Center (CSUR), Hospital Universitari Vall d'Hebron, Institut de Recerca Vall d'Hebron (VHIR), Barcelona, Spain.
Margarida GonçaloDermatology Department, University Hospital, Coimbra Local Health Unit and Faculty of Medicine, University of Coimbra, Coimbra, Portugal.
Vesna Grivcheva-PanovskaUniversity Clinic of Dermatology, School of Medicine, University St. Cyril and Methodius, Skopje, North Macedonia.
Michihiro HideDepartment of Dermatology, Hiroshima City Hiroshima Citizens Hospital, Hiroshima, Japan.
Roman HaklDepartment of Clinical Immunology and Allergology, St. Anne's University Hospital Brno, Brno, Czech Republic.
Ankur JindalAllergy Immunology Unit, Department of Pediatrics, Advanced Pediatrics Centre, Post Graduate Institute of Medical Education and Research, Chandigarh, India.
Constance H KatelarisImmunology & Allergy Unit, Department of Medicine, Campbelltown Hospital and Western Sydney University, Sydney, Australia.
Shailajah KamaleswaranDermatology and Allergy Center, Odense Universitetshospital, Svendborg Sygehus, Nyborg Sygehus, Denmark.
Tamar KinaciyanDepartment of Dermatology, Medical University of Vienna, Vienna, Austria.
Elena LatyshevaImmunopathology Department, NRC Institute of Immunology FMBA Russia, Pirogov Russian National Research Medical University, Moscow, Russia.
José Ignacio Larco SousaAllergy Department, Clínica San Felipe, Lima, Peru.
Ramón Lleonart BellfillAllergology Department, Hospital Universitari de Bellvitge, Institut de Recerca IDIBELL L'Hospitalet de Llobregat, Barcelona, Spain.
Hassan MobayedAllergy and Immunology Division, Department of Medicine, Hamad Medical Corporation, Doha, Qatar.
Martin MetzDermatology and Allergy, Institute of Allergology, Charité-Universitätsmedizin Berlin, Freie Universität Berlin and Humboldt-Universität Zu Berlin, Hindenburgdamm 27, 12203, Berlin, Germany.
Iman NasrAdult Immunology and Allergy Unit, Royal Hospital, Muscat, Oman.
Natasa T MitrevskaDepartment of Dermatology, Re-Medika Hospital, Skopje, North Macedonia.
Stefania NicolaImmunology and Allergy Department, AO Ordine Mauriziano, Department of Medical Science, University of Turin, Turin, Italy.
Claudio Alberto Salvador ParisiSecciones de Alergia Adultos y Pediátrica, Hospital Italiano de Buenos Aires, Buenos Aires, Argentina.
Grzegorz PorebskiDepartment of Clinical and Environmental Allergology, Jagiellonian University Medical College, Krakow, Poland.
Jonny PeterDivision of Allergy and Clinical Immunology, Department of Medicine, University of Cape Town, Cape Town, South Africa.
Mariana Paes Leme FerrianiDepartment of Medicine, Ribeirão Preto Medical School, University of São Paulo, Ribeirão Preto, Brazil.
Nelson Rosario FilhoDepartment of Pediatrics, Federal University of Paraná, Curitiba, Brazil.
Bülent Enis ŞekerelFaculty of Medicine, Pediatric Allergy and Asthma Division, Hacettepe University, Ankara, Turkey.
Faradiba Sarquis SerpaAsthma, Allergy and Immunology Service, Escola Superior de Ciências da Santa Casa de Misericórdia de Vitória, Espírito Santo, Brazil.
Marcin StobieckiDepartment of Clinical and Environmental Allergology, Jagiellonian University Medical College, Krakow, Poland.
Susanne TrainottiTUM School of Medicine and Health, Department of Otorhinolaryngology, Head and Neck Surgery, TUM University Hospital, Munich, Germany.
Anna ValerievaDepartment of Allergology, Medical University of Sofia, University Hospital Alexandrovska, Sofia, Bulgaria.
Chamard WongsaDivision of Allergy and Clinical Immunology, Department of Medicine, Faculty of Medicine Siriraj Hospital, Mahidol University, Bangkok, Thailand.
Jane C Y WongDivision of Rheumatology and Clinical Immunology, Department of Medicine, Queen Mary Hospital, Hong Kong, Hong Kong.
Esra YucelIstanbul Faculty of Medicine, Department of Pediatric Allergy and Immunology, Istanbul University, Istanbul, Turkey.
Yinglei LiCSL Behring, King of Prussia, PA, USA.
Chiara NenciCSL Behring LLC, Bern, Switzerland.
Marcus MaurerDermatology and Allergy, Institute of Allergology, Charité-Universitätsmedizin Berlin, Freie Universität Berlin and Humboldt-Universität Zu Berlin, Hindenburgdamm 27, 12203, Berlin, Germany.
Markus Magerl *Dermatology and Allergy, Institute of Allergology, Charité-Universitätsmedizin Berlin, Freie Universität Berlin and Humboldt-Universität Zu Berlin, Hindenburgdamm 27, 12203, Berlin, Germany.
Philip H Li *Division of Rheumatology and Clinical Immunology, Department of Medicine, The University of Hong Kong, Hong Kong, Hong Kong.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundHereditary angioedema (HAE) is a rare and potentially life-threatening genetic disorder characterized by unpredictable attacks of angioedema. MENTALIST (UnMEt Needs in herediTAry angioedema-a gLobal physIcian perSpecTive) is the first international survey uncovering unmet needs and identifying barriers to optimal management in HAE following the latest update of the World Allergy Organization (WAO)/European Academy of Allergy and Clinical Immunology (EAACI) HAE guidelines.

methodsThis web-based survey comprised 24 questions on HAE management and unmet needs. HAE-expert physicians from the Angioedema Centers of Reference and Excellence network ranked unmet needs according to their own perspectives and their patients' perspectives, using a 10-point Likert scale ranging from 0 (not a challenge/unmet need at all) to 10 (huge challenge/unmet need).

resultsOf 64 respondents from 32 countries, most (91%) had > 5 years of experience in managing HAE. Overall, 48% of respondents (n = 31/64) reported that < 50% of their patients had achieved the WAO/EAACI HAE treatment goals of total disease control and "normalization" of life at the time of the survey. Implementation of consensus recommendations was found to be inconsistent across regions. Gaps in non-HAE-expert physician knowledge, treatment costs, and reimbursement for long-term prophylaxis were the highest-priority challenges according to the respondents. Burden of disease remains a challenge among patients, as reported by their physicians.

conclusionsThe MENTALIST findings highlight a need for removal of barriers to HAE treatment goals and propose a call to action to improve access to treatments, for greater provision of education for physicians and patients, critical collaboration with patient organizations and industry stakeholders and ultimately to optimize HAE care.

Indexed as

Angioedemas, HereditaryPhysiciansHumansSurveys and QuestionnairesGuidelinesHereditary angioedemaManagementTreatment goalsUnmet needs

Identifiers

PMID40722187
PMCPMC12306030

What OpenQuestion holds

Textmetadata
LicenceCC BY
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Registered trials

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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.