Online survey for patients affected by non-tuberculous mycobacterial lung disease (NTM-LD) in Europe
E N P A D E
European NTM lung disease Patient Disease Experience survey
Thank You
Dear visitor,
Thank you for your interest in the ENPADE survey. The ENPADE survey was a combination of an anonymous online survey and a number of pseudonymized interviews among people affected by non-tuberculous mycobacterical lung disease (NTM-LD).
NTM-LD is a bacterial infection caused by non-tuberculous mycobacteria for which treatment typically requires taking multiple antibiotics, often for several years. NTM-LD is a rare lung disease. It particularly affects already vulnerable patients with chronic lung conditions like COPD, bronchiectasis, cystic fibrosis, or patients with an impaired immune system.
The ENPADE survey has helped to better understand patient’s experience of care and burden of disease. The results are expected to help to improve healthcare for NTM-LD patients in Europe.
The survey was successfully completed at the end of February 2022 and has since been evaluated. A short summary of the results can be found below.
You can also download the results summary here.
Amongst other outcomes, the desire for more information was very prominent visible. For this reason, we have already compiled a collection of useful links to make a contribution to improving the findability of existing NTM-LD information.
English:
- https://europeanlung.org
- https://ntminfo.org
- https://www.ntmpatientcare.uk
- https://www.ntmnetworkuk.com
German:
- https://www.ntmfakten.de
- https://www.deutscheemphysemgruppe.de
- https://www.atemwegsliga.de/aktuell/neuer-flyer-lungenerkrankung-durch-nicht-tuberkuloese-mykobakterien.html
Italian:
Dutch:
French:
We would once again like to sincerely thank all participants.