학술논문
Protocol for the EARCO Registry: a pan-European observational study in patients with α1-antitrypsin deficiency
Document Type
article
Author
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
Source
ERJ Open Research, Vol 6, Iss 1 (2020)
Subject
Language
English
ISSN
2312-0541
23120541
23120541
Abstract
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, pathophysiology, genetics and the prognosis of the lung disease in association with AATD. The European Alpha-1 Clinical Research Collaboration (EARCO) is designed to bring together researchers from European countries and to create a standardised database for the follow-up of patients with AATD. Study design and population The EARCO Registry is a non-interventional, multicentre, pan-European, longitudinal observational cohort study enrolling patients with AATD. Data will be collected prospectively without interference/modification of patient's management by the study team. The major inclusion criterion is diagnosed severe AATD, defined by an AAT serum level