Abstract
The EARCO registry contains information on >1000 patients with AATD from 15 countries. The demographic characteristics and the disease characteristics are not significantly different in individuals from Northern or Southern European countries. https://bit.ly/3EdGGcC
Extract
Alpha-1 antitrypsin deficiency (AATD) is characterised by low serum levels of alpha-1 antitrypsin (AAT) and predisposes to the development of pulmonary emphysema and liver disease [1]. This deficiency is considered a rare condition and its prevalence ranges from one in 2400 to one in 6000 individuals in Western European countries [2]. Due to its low prevalence, large observational prospective registries are needed to collect information about the clinical characteristics and prognosis of the individuals affected.
Acknowledgements
The authors would like to thank the patients who participated in this study and the EARCO study investigators (listed below). We wish to acknowledge Elise Heuvelin (European Respiratory Society, Lausanne, Switzerland) for her support in the management of EARCO, and Gemma Vilagut and Christina Founti (Bioclever, Barcelona, Spain) for their support in EARCO data monitoring. We also acknowledge the participation of Eduardo Loeb (Barcelona, Spain) in the development of the database and the monitoring of the data.
List of EARCO study investigators: Georg-Christian Funk (Austria); Wim Janssens, Silvia Pérez-Bogerd (Belgium); Leidy Prada (Colombia); Ana Hecimovic (Croatia); Eva Bartosovska, Jan Chlumsky (Czech Republic); Alan Altraja, Jaanus Martti (Estonia); Angelo G. Corsico, Ilaria Ferrarotti, Simone Scarlata, Mario Malerba (Italy); Jan Stolk, Emily F. van't Wout (the Netherlands); Joanna Chorowstoska-Wyminko (Poland); Catarina Guimaraes, Maria Sucena, Ana Caldas, Raquel Marçoa, Isabel Ruivo dos Santos, Bebiana Conde, Maria Joana Reis Amado, Maia Da Silva, Rita Boaventura (Portugal); Ruxandra Ulmeanu (Romania); María Torres-Duran, Marc Miravitlles, Miriam Barrecheguren, Juan Luis Rodriguez-Hermosa, Myriam Calle-Rubio, José María Hernández-Pérez, José Luis López-Campos, Francisco Casas-Maldonado, Ana Bustamante, Carlota Rodriguez-García, Cristina Martinez-González, Cruz González, Eva Tabernero, Lourdes Lázaro, Virginia Almadana, Mar Fernández-Nieto, Francisco Javier Michel de la Rosa, Carlos Martíez-Rivera, Layla Diab, María Isabel Parra (Spain); Hanan Tanash, Eeva Piitulainen (Sweden); Christian F. Clarenbach (Switzerland); Serap Argun Baris, Dilek Karadogan, Sebahat Genç (Turkey); Alice M. Turner, Beatriz Lara, David G. Parr (UK). EARCO Steering committee: Christian F. Clarenbach and Marc Miravitlles (co-chairs), Robert Bals, Jan Stolk, Joanna Chorostowska-Wynimko, Karen O'Hara, Marion Wilkens, José Luis López-Campos, Alice M. Turner, Ilaria Ferrarotti, Gerry McElvaney and Robert A. Stockley.
Footnotes
Conflict of interest: M. Miravitlles has received speaker fees from AstraZeneca, Boehringer Ingelheim, Chiesi, Cipla, Menarini, Kamada, Takeda, Zambon, CSL Behring, Specialty Therapeutics, Janssen, Grifols and Novartis, consulting fees from AstraZeneca, Atriva Therapeutics, Boehringer Ingelheim, Chiesi, GlaxoSmithKline, CSL Behring, Inhibrx, Ferrer, Menarini, Mereo Biopharma, Spin Therapeutics, ONO Pharma, Palobiofarma SL, Takeda, Novartis, Novo Nordisk, Sanofi, Zambon and Grifols and research grants from Grifols. A.M. Turner has received either grants or speaker fees from AstraZeneca, GlaxoSmithKline, Boehringer Ingelheim, Chiesi, CSL Behring, Takeda, Vertex and Grifols Biotherapeutics. M. Torres-Duran has received speaker fees from Chiesi, CSL Behring, Grifols and Resmed and consulting fees from CSL Behring and Grifols. J.L. López-Campos has received honoraria during the last 3 years for lecturing, scientific advice, participation in clinical studies or writing for publications for (alphabetical order): AstraZeneca, Boehringer Ingelheim, Chiesi, CSL Behring, Esteve, Ferrer, Gebro, GlaxoSmithKline, Grifols, Menarini, Novartis, Rovi, and Teva. J.L. Rodríguez-Hermosa has received speaker fees from Zambon, Bial, Gebro Pharma, GlaxoSmithKline, Chiesi, Boehringer Ingelheim, CSL Behring and Grifols. J.M. Hernández-Pérez has received speaker fees from Grifols, CSL Behring, Astra-Zeneca, GSK, Bial laboratory, Teva laboratory, support for attending meetings from Grifols, CSL Behring, and consulting fees from CSL Behring. F. Casas-Maldonado has received speaker fees from AstraZeneca, Bial, Boehringer Ingelheim, Chiesi, Gebro Pharma, GlaxoSmithKline, Laboratorios Esteve, Laboratorios Ferrer, Menarini, Novartis, Rovi, TEVA, VERTEX, Zambon, CSL Behring and Grifols and consulting fees from AstraZeneca, Chiesi, GlaxoSmithKline, CSL Behring and Grifols. M. Barrecheguren has received speaker fees from Grifols, Menarini, CSL Behring, GSK, Boehringer Ingelheim and consulting fees from GSK, Novartis, CSL Behring and Boehringer Ingelheim. A. Bustamante has received speaker fees from Boehringer Ingelheim, AstraZeneca, GSK, Novartis and Ferrer, and funding for traveling or attending meetings from CSL Behring, AstraZeneca and Chiesi. C. González has received speaker fees from, Menarini, GSK, Novartis, Boehringer Ingelheim and Chiesi. C. Rodríguez-García has received speaker fees from GSK, AstraZeneca, Grifols, Chiesi, Ferrer, Menarini and Boehringer Ingelheim, expert testimony for Chiesi, support for attending meetings from FAES. C. Esquinas has received speaker fees from CSL Behring. C.F. Clarenbach received advisory fees from Roche, Novartis, Boehringer, GSK, Astra Zeneca, Sanofi, Vifor, OM Pharma, CSL Behring, Grifols, Daiichi Sankyo and MSD. C. Guimaraes reports support for the present manuscript from CSL Behring. C. Martinez-González reports lecture honoraria from Boehringer Ingelheim, Zambon; travel support from Roche; leadership role with SEPAR; outside the submitted work. A. Hecimovic reports lecture honoraria from Boehringer Ingelheim, Roche, MSD, Providens, CSL Behring; travel support from Boehringer Ingelheim, Roche; advisory board participation from Boehringer Ingelheim; outside the submitted work. W. Janssens reports grants from AstraZeneca and Chiesi Pharmaceuticals; consulting fees from AstraZeneca and Griphols; lecture honoraria from Chiesi, AZ, GSK; 3 KUL patents on pulmonary function tests; roles as Board Member – past president BERS, chair of Flemish Society for Tuberculosis and Tobacco Prevention; shareholder and co-founder of ArtiQ (AI spinoff company of KU Leuven); outside the submitted work. B. Lara reports travel support from ERS, supporting the present work. J. Stolk reports grants from CSL Behring, Kamada Ltd; outside the submitted work. The remaining authors report no conflicts of interest.
Support statement: The International EARCO Registry is funded by unrestricted grants from Grifols, CSL Behring, Kamada, pH Pharma and Takeda to the European Respiratory Society (ERS). Funding information for this article has been deposited with the Crossref Funder Registry.
- Received August 9, 2022.
- Accepted February 10, 2023.
- Copyright ©The authors 2023. For reproduction rights and permissions contact permissions{at}ersnet.org