e-GLILDnet – A European Granulomatous-Lymphocytic Interstitial Lung Disease Network
CRC Chairs :
- Prof. John Hurst (University College of London, London, UK)
- Prof. Klaus Warnatz (University of Freiburg, Freiburg, Germany)
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.
- To bring together clinicians, researchers and patient representatives, from across Europe, to prioritise research questions in GLILD using Delphi methodology. The Delphi will be published.
- To develop a research protocol to address our top research priority.
- To establish a panel of experts across respiratory medicine, immunology, pathology and radiology to act as a virtual multi-disciplinary team (vMDT) in which new and treatment-resistant GLILD cases from across Europe can be discussed, with advice provided on diagnosis and management. This is modelled on the well-established and successful local respiratory-immunology multi-disciplinary teams (MDT) in London, and the clinical CCI conference in Freiburg. Participating sites would be encouraged to biobank samples for future collaborative analyses.
- To define the content of, and secure approvals to establish a European database for GLILD. Thus, over time, in addition to improving patient care, MDT cases will be entered into a database to provide a prospective research registry and outcome resource, which can be linked back to radiology, pathology, treatment and – where stored – analysis of biological samples such as blood and broncho-alveolar lavage.
- To support and encourage early-career researchers in the field of respiratory-immunology through involvement in network activities.
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 firstname.lastname@example.org
Follow the progress of e-GLILDnet on twitter: @glildnet