ACARE in action

The network of ACARE centers continues to grow despite the many challenges created by COVID-19.

ACARE is a joint venture with GA²LEN and HAEi that fulfills HAEi’s longstanding goal of establishing a worldwide network of accredited angioedema care centers.

In 2020 and 2021, the ACARE Network launched, hosted and aired two webinar series.

The first was ‘Hereditary Angioedema in Times of COVID-19’, two webinars on the pandemic and its effects in dermatology and allergy, with a particular focus on the impact of the pandemic on patients with recurrent angioedema, including HAE. Faculty were Professor Maurer, Dr. Melba Munoz-Roldan and Professor Markus Magerl, all from the Angioedema Center of Reference and Excellence at Charité Universitätsmedizin, Berlin, Germany. Both webinars were well attended and received with more than 100 participants, each representing over 30 countries.

The second webinar with the title ‘The power of prophylaxis’ was a three episodes webinar series on the burden of HAE, the aims of treatment, and the role and relevance of prophylaxis. This series’ objective was to review the impact of HAE on patients and their families, discuss the aims of HAE management and guideline recommendations, talk about strategies for assessing treatment needs and responses, and the tools to help with this. Furthermore, the webinars reviewed the efficacy and safety of prophylactic treatment options and shared real-life experience. For these webinars, the faculty was Chief of Service Margarida Goncalo from the University of Coimbra in Portugal, Associate Professor Maria Staevska from Sofia Medical University in Bulgaria, Consultant Clinical Immunology Sorena Kiani from Royal London Hospital in the United Kingdom, Dr. Hilary Longhurst from Auckland District Health Board, New Zealand, Dr. Anna Sala-Cunill from Universitat Ramon Llull in Barcelona, Spain, as well as Professor Magerl and Professor Maurer from Charité Universitätsmedizin, Berlin, Germany. Furthermore, featured guests were President & CEO Anthony J. Castaldo and Executive Vice President & COO Henrik Balle Boysen, HAEi. Here the reach was between 116 and 172 attendees representing almost 40 countries.

In 2019, live ACARE preceptorships on recurrent angioedema were held in Beijing, China and Muscat, Oman. More live ACARE preceptorships will happen once this is possible again, the next one in Hiroshima, Japan.

ACARE is currently working on two scientific projects:

IMAGINE – with the pilot phase ongoing – is focused on the identification of mutations in genes of patients with recurrent idiopathic and hereditary angioedema. The aim is to identify known and novel mutations in patients with bradykinin-mediated recurrent angioedema using dried blood spot analysis. Project leads are Markus Magerl, Thomas Buttgereit and Marcus Maurer.

SHAERPA – a project in development – focuses on stopping androgen treatment in HAE patients with characterization of reasons and protocols and development of advice for patients and physicians. Here the aim is to develop guidance on how to discontinue androgen treatment based on patient data. Project leads are Carolina Vera, Marcus Maurer and Markus Magerl.

Furthermore, the network is currently working on the INTERACT preceptorship, and the ‘Make a Difference’ webinar series.

With the INTERACT preceptorship series, to be held during the second, third and fourth quarters of 2021, ACARE is reaching out to physicians who treat patients with recurrent angioedema with a series of region-specific, web-based educational training programs, focusing on the differential diagnosis, diagnostic work-up and treatment of recurrent angioedema.

“The four-hours-long INTERACT preceptorships will not only focus on the clinical spectrum, burden, differential diagnosis, and the diagnostic work-up in patients with recurrent angioedema but also the management of recurrent angioedema, with a special focus on new insights and treatment options that have recently become available. Each preceptorship will include interactive elements, case discussions, and lectures, with additional material provided online for download”, HAEi’s Chief Medical Advisor and GA²LEN/HAEi ACARE Coordinator Marcus Maurer explains.

As for ‘Make a Difference’, it is a direct continuation of the ‘The Power of Prophylaxis’ series of webinars. Planned to be held during the two last quarters of 2021 and the first quarter of next year, this series of five webinars will explore how physicians can best aim to provide the optimal diagnostic work-up and therapy to all HAE patients as early as possible. The webinars will cover the strategy of an earlier and broader diagnostic strategy that reduces delay in diagnosis and of a close-meshed therapy control that allows optimizing therapy methods continuously.

Regarding future projects, Professor Maurer says that ACARE is currently working to implement a platform and program for physician education and information on recurrent angioedema under the name ‘ACARE LevelUp’:

“ACARE LevelUp will be a comprehensive and long-term educational platform and program for healthcare professionals to learn, network, and share best clinical practices in recurrent angioedema, worldwide. ACARE LevelUp will be interactive, virtual and aim to update physicians on recent developments in angioedema and establish a platform for interaction among physicians who treat patients with recurrent angioedema. Furthermore, the aim is to help health care professionals involved in the management of angioedema to network on a regional, national and global level and to improve the interaction of general practitioners and specialists, including ACAREs, to streamline the patient journey to disease control. ACARE LevelUp will feature several formats and activities, including webinars, informational websites, podcasts, poster sessions and more.”

Today the global network of ACARE centers consists of more than 50 members spread over most of the globe. Please see acare-network.com for contact details of all ACARE centers. Presently the centers are:

Argentina:

Hospital Italiano de Buenos Aires, Buenos Aires
Instituto de Alergia e Inmunologia del Sur, Hospital Italiano Regional del Sur, Buenos Aires

Brazil:

Alergoalpha/CPAlpha Allergy Clinic and Clinical Research Center, Barueri
Clementino Fraga Filho University Hospital Federal University of Rio de Janeiro, Internal Medicine Department, Immunology Service, Rio de Janeiro
Clinical Hospital of Ribeirão Preto Medical School, Division of Allergy and Immunology, University of São Paulo, Ribeirão Preto
Division of Clinical lmmunology and Allergy, São Paulo University, São Paulo
Federal University of São Paulo, São Paulo
Servico de Alergia e Imunologia, Complexo Hospital de Clinicas Universidade, Curitiba
Serviço de Referência em Angioedema do Hospital Santa Casa de Misericórdia de Vitória, Vitória
University Center Health ABC, Medical School, São Paulo

Bulgaria:

Clinic of Allergology, University Hospital„ Alexandrovska“, Medical University of Sofia, Sofia
Medical Center Excelsior, Sofia

China:

First Hospital, Peking University, Beijing
Sun Yat-sen Memorial Hospital, Guangzhou

Denmark:

Bispebjerg Hospital, Department of Dermatology, Copenhagen

France:

CREAK: National french reference center for angioedema, Grenoble
Montpellier University Hospital, Montpellier
Service de dermatologie et allergologie, Hôpital Tenon, APHP, Paris

Georgia:

Center of Allergy and lmmunology Tbilisi, Tbilisi

Germany:

Department of Dermatology, Venereology and Allergology, Universität Leipzig, Leipzig
Elbeklinikum Buxtehude, Klinik für Dermatologie, Buxtehude
Hautklinik und Poliklinik Universitätsmedizin der Johannes Gutenberg-Universität Mainz, Mainz
Klinik für Dermatologie, Venerologie und Allergologie, Charité – Universitätsmedizin Berlin, Berlin
Occupational Dermatology Department of Dermatology, Universitiy Hospital Carl Gustav Carus, Technical University Dresden, Dresden
Universitätsmedizin Götting, Göttingen

Greece:

Referral Center of Occupational Dermatological Diseases, Athens

Hungary:

Hungarian Angioedema Reference Center, Budapest

India:

Allergy Immunology Unit, Department of Pediatrics, Postgraduate Institute of Medical Education and Research, Chandigarh
Department of Dermatology at Postgraduate Institute of Medical Education and Research, Chandigarh
Dr. D.Y. Patil Medical College & Hospital, Mumbai

Japan:

Department of Dermatology, Graduate School of Biomedical and Health Sciences, and Hiroshima University Hospital, Hiroshima
Division of Dermatology, Kobe University Graduate School of Medicine, Kobe
Yokohama City University Hospital, Yokohama

Kuwait:

Al-Rashed Allergy Center Kuwait, Kuwait City

Netherlands:

Amsterdam UMC, location AMC, Amsterdam

Oman:

Immunology and Allergy Unit, Royal Hospital Muscat, Muscat

Peru:

Allergy Unit at Clinica San Felipe, Lima
SANNA / Clínica el Golf, Lima

Poland:

Centralny Ośrodek Wrodzonego Obrzęku Naczynioruchowgo, Centrum Alergologii Klinicznej, Szpital Uniwersytecki w Krakowie, Krakow
Department of Dermatology, Venerology and Pediatric Dermatology, Samodzielny Publiczny Szpital Kliniczny Nr.1, Lublin
European Center for Diagnosis and Treatment of Urticaria, Zabrze

Portugal:

Clínica de Dermatologia Centro Hospitalar e Universitário de Coimbra, Coimbra

Qatar:

Allergy and Immunology Section, Hamad General Hospital, Doha

Russia:

Moscow Center of Allergy and Immunology, City Clinical Hospital № 52, Moscow
NRC Institute of lmmunology FMBA Russia, Moscow

Saudi Arabia:

King Faisal Specialist Hospital & Research Centre, Riyadh

Slovenia:

University Clinic of Respiratory and Allergic Diseases Golnik, Golnik

South Africa:

UCT Lung Institute, Cape Town

Spain:

Department of Dermatology Hospital del Mar, Barcelona

Thailand:

Siriraj Urticaria and Angioedema Center, Bangkok

Turkey:

Division of Immunology and Allergic Diseases, Department of Internal Medicine, Istanbul Faculty of Medicine, Istanbul
Hacettepe University Faculty of Medicine, Ankara
Kayseri City Education and Research Hospital, Kayseri

United Arab Emirates: