Protocol for the EARCO Registry: a pan-European observational study in patients with alpha(1)-antitrypsin deficiency
- Greulich, T.
- Altraja, A.
- Barrecheguren, M.
- Bals, R.
- Chlumsky, J.
- Chorostowska-Wynimko, J.
- Clarenbach, C.
- Corda, L.
- Corsico, A.G.
- Ferrarotti, I.
- Esquinas, C.
- Gouder, C.
- Hecimovic, A.
- Ilic, A.
- Ivanov, Y.
- Janciauskiene, S.
- Janssens, W.
- Kohler, M.
- Krams, A.
- Lara, B.
- Mahadeva, R.
- McElvaney, G.
- Mornex, J.F.
- O'Hara, K.
- Parr, D.
- Piitulainen, E.
- Schmid-Scherzer, K.
- Seersholm, N.
- Stockley, R.A.
- Stolk, J.
- Sucena, M.
- Tanash, H.
- Turner, A.
- Ulmeanu, R.
- Wilkens, M.
- Yorgancioglu, A.
- Zaharie, A.
- Miravitlles, M.
- EARCO Clinical Res Collaboration
DOIAbstract
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 prospectivel...
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