Patients : Please share this study with your clinicians and encourage them to participate.
Identifying the different pathways of care through which patients with AATD are diagnosed and managed within the different healthcare systems across Europe is a challenge but at the same time would provide information invaluable both for AATD experts and patients
In collaboration with EARCO and AATD core group of the European Respiratory Network for rare respiratory diseases (ERN-LUNG), we intend to try and collect such a data. A survey aimed at professionals involved in the patients referral, AATD diagnosis and management has now been created, and aims to understand:
1. How often patients with AATD are referred for specialist diagnostic, assessment and treatment
2. The type/availability of AATD testing methods in different countries and how these are implemented
3. If patients are routinely followed in ERN-LUNG reference centres, who is involved in the provision of AATD therapy, and if response to treatment is routinely assessed
Data obtained from the survey will be reported in a research manuscript and will provide much-needed information for improving the care for patients with AATD across Europe.
If you are involved in the diagnosis and management of patients with AATD, i.e., AATD testing, genetic counselling, pulmonology/primary care, etc., we would like to ask you to complete this survey using the following link:
https://www.surveymonkey.co.uk/r/EurPathwaysAATDSurvey
Please do forward this link to colleagues outside of AATD expert centres who refer patients for AATD diagnostic, their perspective is most valued as well
We would appreciate if you could complete the survey by July 15th
Survey development was supported by CSL Behring,
Thank you
Joanna Chorostowska-Wynimko, MD PhD
Maria Sucena, MD PhD