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

Autor: 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)

Publikováno v: ERJ Open Research, Vol 6, Iss 4 (2020)

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-

Externí odkaz: https://doaj.org/article/3dc0881f12aa43ff84cc6643d3544e50

Protocol for the EARCO Registry

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

Publikováno v: ERJ Open Research, Vol 6, Iss 1 (2020)
ERJ Open Research, 6(1). EUROPEAN RESPIRATORY SOC JOURNALS LTD
ERJ Open Research
ERJ Open Research, European Respiratory Society, 2020, 6 (1), pp.00181-2019. ⟨10.1183/23120541.00181-2019⟩

Rationale and objectives Alpha-1 antitrypsin deficiency (AATD) is a genetic condition that leads to an increased risk of emphysema and liver disease. Despite extensive investigation, there remain unanswered questions concerning the natural history, p

Externí odkaz: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::31db799d18d787e6508162520d5dca7a
https://hdl.handle.net/1887/3184048

Second National Conference on Interstitial Lung Diseases.

Autor: Strâmbu, Irina

Publikováno v: Pneumologia; 2017, Vol. 66 Issue 3, p166-167, 2p