New survey to help improve the lives of those affected by Granulomatous-Lymphocytic Interstitial Lung Disease (GLILD)

The European Granulomatous-Lymphocytic Interstitial Lung Disease Network (eGLILDnet) has developed a short survey to learn what ‘unanswered questions’ you have about GLILD. These are questions that you have not been able to have answered at all or to a level that you found helpful. This will help researchers to understand what areas need to be researched the most and what is most important to you as somebody who has been affected by GLILD. This means that the information you provide can help to improve the care and lives of those affected by GLILD.

Survey details

Who can take part?

• A person with GLILD
• A family member of someone with or who had GLILD
• A carer of someone with or who had GLILD
• A healthcare professional or support worker working with people with GLILD

Closing date: 14 September at 09:00 CEST.

The survey is available in 8 languages:

ENGLISH: https://www.surveymonkey.co.uk/r/eGLILD_GB

CZECH: https://www.surveymonkey.co.uk/r/eGLILD_CZ

FRENCH: https://www.surveymonkey.co.uk/r/eGLILD_FR 

GERMAN: https://www.surveymonkey.co.uk/r/eGLILD_DE

ITALIAN: https://www.surveymonkey.co.uk/r/eGLILD_IT

PORTUGESE: https://www.surveymonkey.co.uk/r/eGLILD_PT 

SPANISH: https://www.surveymonkey.co.uk/r/eGLILD_ES

SWEDISH: https://www.surveymonkey.co.uk/r/eGLILD_SE

Who are eGLILDnet?

eGLILDnet is a collaboration of clinicians and scientists from across Europe who are dedicated to improving the lives of those living with GLILD. The teams include members from: The European Respiratory Society (ERS), the European Society for Immunodeficiencies (ESID), the International Patient Organisation for Primary Immunodeficiencies (IPOPI) and ELF.

Contact

If you are interested in more information about e-GLILDnet or would like to join the registry, please contact scientific@ersnet.org

Follow the progress of e-GLILDnet on twitter: @glildnet