Respiratory Research (Dec 2022)
Clinical and functional characteristics of individuals with alpha-1 antitrypsin deficiency: EARCO international registry
- Marc Miravitlles,
- Alice M. Turner,
- María Torres-Duran,
- Hanan Tanash,
- Carlota Rodríguez-García,
- José Luis López-Campos,
- Jan Chlumsky,
- Catarina Guimaraes,
- Juan Luis Rodríguez-Hermosa,
- Angelo Corsico,
- Cristina Martinez-González,
- José María Hernández-Pérez,
- Ana Bustamante,
- David G. Parr,
- Francisco Casas-Maldonado,
- Ana Hecimovic,
- Wim Janssens,
- Beatriz Lara,
- Miriam Barrecheguren,
- Cruz González,
- Jan Stolk,
- Cristina Esquinas,
- Christian F. Clarenbach
Affiliations
- Marc Miravitlles
- Pneumology Department, Hospital Universitari Vall d’Hebron; Vall d’Hebron Institut de Recerca (VHIR), Vall d’Hebron Barcelona Hospital Campus
- Alice M. Turner
- Respiratory Medicine, University Hospitals Birmingham NHS Foundation Trust
- María Torres-Duran
- Servicio de Neumología. Hospital Álvaro Cunqueiro. NeumoVigo I+I Research Group, IIS Galicia Sur
- Hanan Tanash
- Department of Respiratory Medicine and Allergology, Skåne University Hospital, Lund University
- Carlota Rodríguez-García
- Servicio de Neumología, Complejo Hospitalario Clínico-Universitario de Santiago
- José Luis López-Campos
- Centro de Investigación Biomédica en Red de Enfermedades Respiratorias (CIBERES), Instituto de Salud Carlos III
- Jan Chlumsky
- Department of Pneumology, Thomayer Hospital, First Faculty of Medicine, Charles University
- Catarina Guimaraes
- Pulmonology Department, Hospital da Senhora da Oliveira
- Juan Luis Rodríguez-Hermosa
- Servicio de Neumología. Hospital Clínico de San Carlos. Departamento de Medicina, Facultad de Medicina, , Universidad Complutense de Madrid
- Angelo Corsico
- Pneumology Unit, IRCCS San Matteo Hospital Foundation
- Cristina Martinez-González
- Pneumology Department, Hospital Universitario Central de Asturias, Instituto de Investigacion Sanitaria del Principado de Asturias
- José María Hernández-Pérez
- Pneumology Department, Hospital Universitario Nuestra Señora de La Candelaria
- Ana Bustamante
- Pneumology Section, Hospital Sierrallana-TresMares
- David G. Parr
- Department of Respiratory Medicine, University Hospitals of Coventry and Warwickshire
- Francisco Casas-Maldonado
- Servicio de Neumología. Hospital Clínico Universitario San Cecilio. Departamento de Medicina, Facultad de Medicina, Universidad de Granada
- Ana Hecimovic
- Clinic for Respiratory Diseases, University Hospital Center Zagreb
- Wim Janssens
- Laboratory of Respiratory Diseases, Department of Chronic Disease, Metabolism and Ageing, Katholieke Universiteit (KU) Leuven
- Beatriz Lara
- Department of Respiratory Medicine, University Hospitals of Coventry and Warwickshire
- Miriam Barrecheguren
- Pneumology Department, Hospital Universitari Vall d’Hebron; Vall d’Hebron Institut de Recerca (VHIR), Vall d’Hebron Barcelona Hospital Campus
- Cruz González
- Servicio de Neumología, Hospital Clínico Universitario de Valencia. Instituto de Investigación INCLIVA
- Jan Stolk
- Department of Pulmonology, Leiden University Medical Center
- Cristina Esquinas
- Pneumology Department, Hospital Universitari Vall d’Hebron; Vall d’Hebron Institut de Recerca (VHIR), Vall d’Hebron Barcelona Hospital Campus
- Christian F. Clarenbach
- Division of Pulmonology, University Hospital Zurich
- DOI
- https://doi.org/10.1186/s12931-022-02275-4
- Journal volume & issue
-
Vol. 23,
no. 1
pp. 1 – 12
Abstract
Abstract Background Alpha-1 antitrypsin deficiency (AATD) is a rare disease that is associated with an increased risk of pulmonary emphysema. The European AATD Research Collaboration (EARCO) international registry was founded with the objective of characterising the individuals with AATD and investigating their natural history. Methods The EARCO registry is an international, observational and prospective study of individuals with AATD, defined as AAT serum levels 1000 individuals with AATD from 15 countries in its first 2 years. Baseline cross sectional data provide relevant information about the clinical phenotypes of the disease, the patterns of functional impairment and factors associated with poor lung function. Trial registration www.clinicaltrials.gov (ID: NCT04180319)
Keywords
