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Titel: Protocol for the EARCO Registry : a pan-European observational study in patients with α1-antitrypsin deficiency
VerfasserIn: Greulich, Timm
Altraja, Alan
Barrecheguren, Miriam
Bals, Robert
Chlumsky, Jan
Chorostowska-Wynimko, Joanna
Clarenbach, Christian
Corda, Luciano
Corsico, Angelo Guido
Ferrarotti, Ilaria
Esquinas, Cristina
Gouder, Caroline
Hećimović, Ana
Ilic, Aleksandra
Ivanov, Yavor
Janciauskiene, Sabina
Janssens, Wim
Kohler, Malcolm
Krams, Alvils
Lara, Beatriz
Mahadeva, Ravi
McElvaney, Gerry
Mornex, Jean-François
O'Hara, Karen
Parr, David
Piitulainen, Eava
Schmid-Scherzer, Karin
Seersholm, Niels
Stockley, Robert A.
Stolk, Jan
Sucena, Maria
Tanash, Hanan
Turner, Alice
Ulmeanu, Ruxandra
Wilkens, Marion
Yorgancioğlu, Arzu
Zaharie, Ana
Miravitlles, Marc
Sprache: Englisch
Titel: ERJ Open Research
Bandnummer: 6
Heft: 1
Verlag/Plattform: European Respiratory Society
Erscheinungsjahr: 2019
DDC-Sachgruppe: 610 Medizin, Gesundheit
Dokumenttyp: Journalartikel / Zeitschriftenartikel
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 <11 µM (50 mg·dL−1) and/or a proteinase inhibitor genotype ZZ, SZ or compound heterozygotes or homozygotes of other rare deficient variants. Assessments at baseline and during the yearly follow-up visits include lung function testing (spirometry, body plethysmography and diffusing capacity of the lung), exercise capacity, blood tests and questionnaires (symptoms, quality of life and physical activity). To ensure correct data collection, there will be designated investigator staff to document the data in the case report form. All data will be reviewed by the EARCO database manager. Summary The EARCO Registry aims to understand the natural history and prognosis of AATD better with the goal to create and validate prognostic tools to support medical decision-making.
DOI der Erstveröffentlichung: 10.1183/23120541.00181-2019
URL der Erstveröffentlichung: https://openres.ersjournals.com/content/6/1/00181-2019
Link zu diesem Datensatz: urn:nbn:de:bsz:291--ds-367928
hdl:20.500.11880/33427
http://dx.doi.org/10.22028/D291-36792
ISSN: 2312-0541
Datum des Eintrags: 12-Jul-2022
Fakultät: M - Medizinische Fakultät
Fachrichtung: M - Innere Medizin
Professur: M - Prof. Dr. Robert Bals
Sammlung:SciDok - Der Wissenschaftsserver der Universität des Saarlandes

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