International Severe Asthma Registry: Mission Statement

G. Walter Canonica (1) , Marianna Alacqua (2) , Alan Altraja , Vibeke Backer , Elisabeth Bel , Leif Bjermer , Unnur Bjornsdottir , Arnaud Bourdin (3, 4) , Guy Brusselle , George Christoff , Borja Cosio , Richard Costello , J. Mark Fitzgerald (5) , Peter Gibson , Liam Heaney , Enrico Heffler (6) , Mark Hew , Takashi Iwanaga , Rupert Jones , Mariko Koh , Chin Kook Rhee , Sverre Lehmann , Lauri Lehtimäki , Dora Ludviksdottir , Anke-Hilse Maitland-van Der Zee , Andrew Menzies-Gow (7) , Nikolaos Papadopoulos , Vicente Plaza , Luis Perez de Llano , Matthew Peters , Celeste Porsbjerg , Mohsen Sadatsafavi , You Sook Cho , Yuji Tohda , Trung Tran (8) , Eileen Wang , James Zangrilli , Lakmini Bulathsinhala , Victoria Carter , Isha Chaudhry , Neva Eleangovan , Naeimeh Hosseini , Thao Le , Ruth Murray (9) , Chris Price (10) , David Price (11)

1 Allergy & Respiratory Diseases Clinic - DIMI
2 AstraZeneca, Luton, United Kingdom of Great Britain and Northern Ireland.
3 PhyMedExp - Physiologie & médecine expérimentale du Cœur et des Muscles [U 1046]
4 CHRU Montpellier - Centre Hospitalier Régional Universitaire [Montpellier]
5 UBC and VGH Divisions of Respiratory Medicine [Vancouver, BC, Canada]
6 Dipartimento di Scienze Mediche
7 Royal Brompton Hospital, Lung Division, London, United Kingdom of Great Britain and Northern Ireland.
8 AstraZeneca, Gaithersburg, Maryland, United States.
9 MedScript Ltd
10 Aberystwyth University
11 School of Medicine - Division of Infection and Immunity [Cardiff, UK]

Regional and/or national severe asthma registries provide valuable country-specific information. However, they are often limited in scope within the broader definitions of severe asthma, have insufficient statistical power to answer many research questions, lack intra-operability to share lessons learned, and have fundamental differences in data collected, making cross comparisons difficult. What is missing is a worldwide registry which brings all severe asthma data together in a cohesive way, under a single umbrella, based on standardized data collection protocols, permitting data to be shared seamlessly. The International Severe Asthma Registry (ISAR; http://isaregistries.org/) is the first global adult severe asthma registry. It is a joint initiative where national registries (both newly created and pre-existing) retain ownership of their own data but open their borders and share data with ISAR for ethically approved research purposes. Its strength comes from collection of patient level, anonymous, longitudinal, real-life, standardized, high-quality data (using a core set of variables) from countries across the world, combined with organizational structure, database experience, inclusivity/openness, and clinical, academic, and database expertise. This gives ISAR sufficient statistical power to answer important research questions, sufficient data standardization to compare across countries and regions, and the structure and expertise necessary to ensure its continuance as well as the scientific integrity and clinical applicability of its research. ISAR offers a unique opportunity to implement existing knowledge, generate new knowledge, and identify the unknown, therefore promoting new research. The aim of this commentary is to fully describe how ISAR may improve our understanding of severe asthma.

Mots clés: ISAR; severe asthma

Domaines: Sciences du Vivant [q-bio]

G. Walter Canonica, Marianna Alacqua, Alan Altraja, Vibeke Backer, Elisabeth Bel, et al.. International Severe Asthma Registry: Mission Statement. Chest, 2019, ⟨10.1016/j.chest.2019.10.051⟩. ⟨hal-02413498⟩