The patient perspective of alpha-1 antitrypsin deficiency: disease burden and unmet needs

by Marion Wilkens, Michael Bartlett, Frank Willersinn, Karen O'Hara, Jeanette Boyd, Jessica Denning
Published 2021-03-01

Protocol for the EARCO Registry: a pan-European observational study in patients with α1-antitrypsin deficiency

by Timm Greulich, Alan Altraja, Miriam Barrecheguren, Robert Bals, Jan Chlumsky, Joanna Chorostowska-Wynimko, Christian Clarenbach, Luciano Corda, Angelo Guido Corsico, Ilaria Ferrarotti, Cristina Esquinas, Caroline Gouder, Ana Hećimović, Aleksandra Ilic, Yavor Ivanov, Sabina Janciauskiene, Wim Janssens, Malcolm Kohler, Alvils Krams, Beatriz Lara, Ravi Mahadeva, Gerry McElvaney, Jean-François Mornex, Karen O'Hara, David Parr, Eava Piitulainen, Karin Schmid-Scherzer, Niels Seersholm, Robert A. Stockley, Jan Stolk, Maria Sucena, Hanan Tanash, Alice Turner, Ruxandra Ulmeanu, Marion Wilkens, Arzu Yorgancioğlu, Ana Zaharie, Marc Miravitlles
Published 2020-03-01

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

by 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, Beatriz Lara, 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)
Published 2020-12-01