RT Journal Article SR Electronic T1 Research priorities in α1-antitrypsin deficiency: results of a patients' and healthcare providers' international survey from the EARCO Clinical Research Collaboration JF ERJ Open Research JO erjor FD European Respiratory Society SP 00523-2020 DO 10.1183/23120541.00523-2020 VO 6 IS 4 A1 Miriam Barrecheguren A1 Karen O'Hara A1 Marion Wilkens A1 Jeanette Boyd A1 Ewa Kolda A1 Beatriz Lara A1 Joanna Chorostowska-Wynimko A1 Ilaria Ferrarotti A1 Jan Chlumský A1 Christian Clarenbach A1 Timm Greulich A1 Marc Miravitlles A1 Maria Sucena A1 , YR 2020 UL http://openres.ersjournals.com/content/6/4/00523-2020.abstract AB α1-antitrypsin deficiency (AATD) is a rare and under-recognised genetic condition. Owing to its low prevalence, international initiatives are key for conducting high-quality research in the field.From July 2018 to December 2019, the European Alpha-1 Research Collaboration (EARCO) developed and conducted two surveys, one for healthcare providers and one for patients and caregivers, aiming to identify research priorities and barriers in access to treatment for AATD.A survey on 164 research questions was electronically sent to 230 AATD experts in Europe, and 94 completed surveys from 24 countries were received. The top research areas identified by healthcare providers were causes of variable progression and poor outcomes, improvement in diagnosis, initiation and optimal dosing of augmentation therapy and effectiveness of self-management interventions. During the same period, 438 surveys were completed by patients and caregivers from 26 countries. The top research areas identified were improving knowledge about AATD, in particular among general practitioners, access to AATD specialised centres and access to reliable, easy to understand information about living with AATD. Regarding barriers to treatment, participants from countries where augmentation therapy was reimbursed prioritised improving knowledge in AATD, while respondents in non-reimbursed countries regarded access to AATD augmentation therapy and to specialised centres as the most relevant.The main research and management priorities identified by healthcare providers and patients included understanding the natural history of AATD, improving information to physicians, improving access to specialised reference centres, personalising treatment and having equal opportunities for access to existing therapies.Surveys for patients and healthcare providers on research priorities in AATD, developed by the @EuroRespSoc CRC EARCO, show that international collaboration and engagement with patients are key development strategies needed for improvement https://bit.ly/2ItIzaW