Introduction

We are asking people with Alpha-1 Antitrypsin Deficiency (AATD), or their families and friends, to tell us what we should be looking at to provide answers to the challenges of care, treatment and living with AATD.

The priorities for research identified by people with AATD and their families may be different to the point of view of doctors and researchers. The aim of this survey is to find out which topics of research YOU think are most relevant or most likely to provide answers to the challenges of treating and living with AATD and will therefore have the greatest impact on quality of life for people with AATD.

This survey is part of the scope of work lead by EARCO (European Alpha-1 Research Collaboration), a Clinical Research Collaboration (CRC) of the European Respiratory Society (ERS), to facilitate multidisciplinary collaborative research in AATD (www.ersnet.org/research/earco-european-alpha-1-research-collaboration).

Your answers will influence what research is done by these research centres in the future. The questionnaire is mainly focused on the respiratory burden and lung diagnosis and treatment for AATD.

This survey will take up to 15 minutes to complete and is anonymous. If you would like to receive updates or would like to become more involved in the project, you can enter your email address at the end of the survey. If you would like to do this, you will be directed to a different surveymonkey page. This means that your email address and survey responses are separate, and anonymity is maintained.

Your participation will significantly contribute to the success of this project. This survey will close on the 8 December 2019. Thank you very much for your time and effort!

Dr. Marc Miravitlles and Dr. Timm Greulich - CRC EARCO Chairs
 

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