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Research Priorities in alpha-1 antitrypsin deficiency: International survey from EARCO.
Miriam Barrecheguren / Maria Sucena
Hospital Universitari Vall d’Hebron / Centro Hospitalar do Porto
Barcelona (Spain) / Porto (Portugal)
Finished and published
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One of the initial objectives of EARCO was to build a network of patients’ representatives, researchers and clinical investigators, to identify research needs and establish an agenda for AATD research. In this sense, the involvement of patients´ representatives and organizations is essential in order to conduct patient centered quality research. To reach this goal, a task force of EARCO developed and conducted two surveys, one for healthcare providers (HCP), and the second for patients and caregivers to better understand the key research needs and barriers to management in the field of AATD.
To identify the most important research needs for healthcare professionals and for patients and caregivers.
The survey for healthcare providers was sent electronically to 230 AATD experts in Europe and we received 94 complete questionnaires (response rate 41%) from 24 countries.
A total of 438 questionnaires from 26 countries were completed. 84% were individuals diagnosed with AATD and 16% were parents, relatives or caregivers
A survey on 164 research questions was electronically sent to 230 AATD experts in Europe, and 94 completed questionnaires from 24 countries were received. The top questions identified by HCP 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, a total of 438 questionnaires 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 to reliable, easy to understand information about living with AATD. Regarding barriers to treatment, participants from countries where augmentation therapy was reimbursed prioritized also improving knowledge in AATD, while for respondents in non reimbursed countries access to AATD augmentation therapy and to specialised centres were the most relevant.