Date:13 November, 2019

Research Priorities in Alpha-1 antitrypsin deficiency (AATD)

We need your help!
Being led by the European Alpha-1 Research Collaboration (EARCO), a survey has been created to give us all input on what we think are the priorities for research should be.

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.

 

The survey can be found here: https://www.surveymonkey.co.uk/r/EARCO_AATD_survey