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As described in the ERS statement on AATD a significant number of affected individuals remain undiagnosed, although the World Health Organisaton (WHO) recommends that all patents who have COPD or adult-onset asthma should be tested.
Lack of awareness and education regarding AATD has been suggested as one of the most common obstacles to early diagnosis of AATD. Also the lack, or poor availability, of specific treatment such as augmentation may influence patients’ desire to be tested.
The study aims to better understand delays in diagnosing AATD and how this may affect patients’ health, with the goal of improving earlier detection and outcomes in the future.
This will be a retrospective observational study of baseline data collected as part of the EARCO registry. Data will be analysed with respect to the time from presentation of initial respiratory and/or liver symptoms to the time of formal diagnosis of AATD.
This study will use existing data from the European Alpha-1 Research Collaboration (EARCO) registry. Researchers will look back at patient records to examine how long it takes from when symptoms such as breathing problems or liver issues first appear to when a patient is tested and they receive a formal diagnosis of AATD.