Protocol for the EARCO Registry: a pan-European observational study in patients with alpha(1)-antitrypsin deficiency
The result's identifiers
Result code in IS VaVaI
<a href="https://www.isvavai.cz/riv?ss=detail&h=RIV%2F00216208%3A11110%2F20%3A10411692" target="_blank" >RIV/00216208:11110/20:10411692 - isvavai.cz</a>
Alternative codes found
RIV/00064190:_____/20:N0000106
Result on the web
<a href="https://verso.is.cuni.cz/pub/verso.fpl?fname=obd_publikace_handle&handle=PvsvviXSIP" target="_blank" >https://verso.is.cuni.cz/pub/verso.fpl?fname=obd_publikace_handle&handle=PvsvviXSIP</a>
DOI - Digital Object Identifier
<a href="http://dx.doi.org/10.1183/23120541.00181-2019" target="_blank" >10.1183/23120541.00181-2019</a>
Alternative languages
Result language
angličtina
Original language name
Protocol for the EARCO Registry: a pan-European observational study in patients with alpha(1)-antitrypsin deficiency
Original language description
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 mu M (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.
Czech name
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Czech description
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Classification
Type
J<sub>imp</sub> - Article in a specialist periodical, which is included in the Web of Science database
CEP classification
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OECD FORD branch
30203 - Respiratory systems
Result continuities
Project
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Continuities
V - Vyzkumna aktivita podporovana z jinych verejnych zdroju
Others
Publication year
2020
Confidentiality
S - Úplné a pravdivé údaje o projektu nepodléhají ochraně podle zvláštních právních předpisů
Data specific for result type
Name of the periodical
ERJ Open Research [online]
ISSN
2312-0541
e-ISSN
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Volume of the periodical
6
Issue of the periodical within the volume
1
Country of publishing house
CH - SWITZERLAND
Number of pages
11
Pages from-to
00181-2019
UT code for WoS article
000532553200023
EID of the result in the Scopus database
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