The European Lung Foundation (ELF)Founded by ERS in 2000, ELF brings together patients and the public with respiratory professionals to positively influence lung health.Visit the ELF site
The e-GLILDnet (European Granulomatous-Lymphocytic Interstitial Lung Disease Network) Clinical Research Collaboration was launched by the European Respiratory Society (ERS) in 2019, in association with the European Society for Immunodeficiencies (ESID), European Lung Foundation (ELF) and the International Patient Organisation for Primary Immunodeficiencies (IPOPI). It is a collaboration of clinicians and scientists from across Europe dedicated to improving the lives of those living with Granulomatous-Lymphocytic Interstitial Lung Disease (GLILD), a lung complication seen in people affected by primary immunodeficiency, particularly common variable immunodeficiency disorders (CVID). GLILD is the lung component of a systemic autoimmune/auto-inflammatory component of CVID that can result in reduced survival, is resistant to antibody replacement, and for which there is very little evidence based-therapy. Therapeutic potential is increasing rapidly with the identification of specific mechanisms underlying GLILD. Only by adopting a multi-professional Europe-wide approach in GLILD can we deliver practice-changing research and improve the lives of people living with this condition.
The e-GLILDnet Steering Committee is composed of the two CRC chairs, multi-professional clinicians and researchers, two early-career researchers (one ERS, one ESID) and patient representatives. It currently includes pulmonologists, immunologists, radiologists and pathologists from eight European countries and is actively making links with other centres across Europe.
The Stakeholder Board comprises a partnership between the different stakeholders e.g Steering Committee, national centres leads, funding partners, scientific experts, and patient advisory groups.
These two groups will combine their expertise in e-GLILDnet to act as the go-to resource of clinical experience in GLILD for patients and clinicians, and as a network to conduct clinical trials and basic research in GLILD.
If you are interested in more information about e-GLILDnet or would like to join the registry, please contact email@example.com.
Follow the progress of e-GLILDnet on Twitter: @glildnet
Hurst JR, Warnatz K; ERS eGLILDnet Clinical Research Collaboration. Interstitial lung disease in primary immunodeficiency: towards a brighter future. Eur Respir J. 2020;55(4):2000089. Published 2020 Apr 3. doi:10.1183/13993003.00089-2020