Protocol for the earco registry: A pan-european observational study in patients with α1-antitrypsin deficiency

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dc.contributor.authorGreulich T.
dc.contributor.authorAltraja A.
dc.contributor.authorBarrecheguren M.
dc.contributor.authorBals R.
dc.contributor.authorChlumsky J.
dc.contributor.authorChorostowska-Wynimko J.
dc.contributor.authorClarenbach C.
dc.contributor.authorCorda L.
dc.contributor.authorCorsico A.G.
dc.contributor.authorFerrarotti I.
dc.contributor.authorEsquinas C.
dc.contributor.authorGouder C.
dc.contributor.authorHećimović A.
dc.contributor.authorIlic A.
dc.contributor.authorIvanov Y.
dc.contributor.authorJanciauskiene S.
dc.contributor.authorJanssens W.
dc.contributor.authorKohler M.
dc.contributor.authorKrams A.
dc.contributor.authorLara B.
dc.contributor.authorMahadeva R.
dc.contributor.authorMcElvaney G.
dc.contributor.authorMornex J.-F.
dc.contributor.authorO’hara K.
dc.contributor.authorParr D.
dc.contributor.authorPiitulainen E.
dc.contributor.authorSchmid-Scherzer K.
dc.contributor.authorSeersholm N.
dc.contributor.authorStockley R.A.
dc.contributor.authorStolk J.
dc.contributor.authorSucena M.
dc.contributor.authorTanash H.
dc.contributor.authorTurner A.
dc.contributor.authorUlmeanu R.
dc.contributor.authorWilkens M.
dc.contributor.authorYorgancioğlu A.
dc.contributor.authorZaharie A.
dc.contributor.authorMiravitlles M.
dc.date.accessioned2024-07-22T08:07:59Z
dc.date.available2024-07-22T08:07:59Z
dc.date.issued2020
dc.description.abstractRationale 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. © ERS 2020.
dc.identifier.DOI-ID10.1183/23120541.00181-2019
dc.identifier.issn23120541
dc.identifier.urihttp://akademikarsiv.cbu.edu.tr:4000/handle/123456789/14182
dc.language.isoEnglish
dc.publisherEuropean Respiratory Society
dc.rightsAll Open Access; Gold Open Access
dc.subjectalpha 1 antitrypsin
dc.subjectbronchodilating agent
dc.subjectC reactive protein
dc.subjectproteinase inhibitor
dc.subjectalpha antitrypsin deficiency
dc.subjectArticle
dc.subjectblood gas analysis
dc.subjectcohort analysis
dc.subjectcomputer assisted tomography
dc.subjectdisease severity
dc.subjectdyspnea
dc.subjecterythrocyte count
dc.subjectexercise
dc.subjectfollow up
dc.subjecthuman
dc.subjecthypertransaminasemia
dc.subjectjaundice
dc.subjectleukocyte count
dc.subjectlongitudinal study
dc.subjectlung diffusion capacity
dc.subjectlung function
dc.subjectmortality
dc.subjectmulticenter study
dc.subjectobservational study
dc.subjectoutcome assessment
dc.subjectpatient-reported outcome
dc.subjectphysical activity
dc.subjectplatelet count
dc.subjectplethysmography
dc.subjectprognosis
dc.subjectprospective study
dc.subjectquestionnaire
dc.subjectrespiratory function
dc.subjectrisk factor
dc.subjectsix minute walk test
dc.subjectsmoking
dc.subjectspirometry
dc.subjectvirus load
dc.titleProtocol for the earco registry: A pan-european observational study in patients with α1-antitrypsin deficiency
dc.typeArticle

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