Research priorities in α1-antitrypsin deficiency: results of a patients' and healthcare providers' international survey from the EARCO Clinical Research Collaboration

Research priorities in α1-antitrypsin deficiency: results of a patients' and healthcare providers' international survey from the EARCO Clinical Research Collaboration

α1-antitrypsin deficiency (AATD) is a rare and under-recognised genetic condition. Owing to its low prevalence, international initiatives are key for conducting high-quality research in the field. From July 2018 to December 2019, the European Alpha-1 Research Collaboration (EARCO) developed and cond...

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Main Authors: Miriam Barrecheguren, Karen O'Hara, Marion Wilkens, Jeanette Boyd, Ewa Kolda, Beatriz Lara, Joanna Chorostowska-Wynimko, Ilaria Ferrarotti, Jan Chlumský, Christian Clarenbach, Timm Greulich, Marc Miravitlles, Maria Sucena, Members of EARCO CRC Timm Greulich (Germany, co-chair) Marc Miravitlles (Spain co-chair). Steering committee:, Joanna Chorostowska-Wymiko (Poland), Ilaria Ferrarotti (Italy), Noel G. McElvaney (Ireland), Karen O'Hara (UKpatients' representative), Jan Stolk (Netherlands), Robert A. Stockley, Alice Turner (UK), Marion Wilkens (Germany patients' representative), EARCO members:, Angelo Corsico, Luciano Corda (Italy), Maria Sucena (Portugal), Miriam Barrecheguren (Spain ERS early career representative), Cristina Esquinas (Spain), David Parr, Ravi Mahadeva (UK), Jan Chlumsky (Czech Republic), Sabina Janciauskiene, Robert Bals (Germany), Jens Ulrik Jensen (Denmark), Kostas Kostikas (Greece), Malcolm Kohler, Christian Clarenbach (Switzerland), Alan Altraja (Estonia), Wim Jenssens, Silvia Pérez-Bogerd (Belgium), Caroline Gouder (Malta), Ana Hecimovic (Croatia), Aleksandra Dudvarski (Serbia), Alvils Krams (Latvia), Ruxandra Ulmeanu, Ana Zaharie (Rumania), Jean-François Mornex (France), Arzu Yorgancioglu (Tukey), Karin Schmid-Scherzer (Austria), Hanan Tanash, Eeva Piitulainen (Sweden), Oleksandr Mazulov (Ukraine), Yavor Ivanov (Bulgaria)
Format: Article
Language:English
Published: European Respiratory Society 2020-12-01
Series:ERJ Open Research
Online Access:http://openres.ersjournals.com/content/6/4/00523-2020.full

Internet

http://openres.ersjournals.com/content/6/4/00523-2020.full

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