December 17, 2020
GLILD Research project: update and call to action
IPOPI is happy to share an update on the clinical research collaboration e-GLILD-net on granulomatous-lymphocytic interstitial lung disease (GLILD), seen in patients with common variable immunodeficiency disorders (CVID) or CVID-like diseases.
e-Glild is glad to inform that 252 people from 48 countries across Europe, Asia, Australia and the Americas responded to the survey, and 135 people from 33 countries left one or more questions/statements leading to 699 individual statements submitted in the Diagnosis (169), Treatment (187), Management (144), Science (128) and Other categories (70). A big thank you to all respondents!
Now we come to the second part of this survey that consists of determining the most important research topics on diagnostic evaluation, follow-up, and treatment of GLILD in CVID and CVID-like diseases. We are now calling for patients/carers with GLILD or physicians’ input!
From the original 699 responses 27 research questions have been formulated where we could develop resources and/or consensus recommendations.
And now, if you are a patient/carer with GLID or a physician, it’s time to vote for *YOUR* research priorities in GLID:
1 – Read all 27 questions available in simple and technical language;
2 – Choose up to 10 questions you think are most important to answer. You can choose fewer if you wish.
Go to our survey (links below) and enter your choices.
You have until the end of the year.
Thank you so much for your kind cooperation!