Rare ILD & eurILDreg Kick-off-meeting

22.06. – 24.06.2022 – Castle Rauischholzhausen

Updates and Registration:

Upcoming Events

 

Leading experts in the field of Interstitial lung disease (ILDs) have joined forces in this initiative, the European ILD Registry and Biobank (eurILDreg).  Following experts are already members of the eurILDreg:

 

Andreas Guenther, Giessen, Germany Lead Coordinator
Bruno Crestani, Paris, France Co-Coordinator
Philippe Bonniaud, Dijon, France  
Athol Wells, London, United Kingdom  
Nikhil Hirani, Edinburgh, United Kingdom  
Carlo Vancheri, Catania, Italy  
Venerino Poletti, Forli, Italy  
Carlo Albera, Turino, Italy  
Marlies Wijsenbeek, Rotterdam, Netherlands  
Maria Molina Molina, Barcelona, Spain  
Elisabeth Bendstrup, Aarhus, Denmark  

 

The eurILDreg represents the logical extension of existing local registry and biobank activities in each of the participating sites and the already existing pediatric European ILD registry and biobank (chILD-EU; http://www.klinikum.uni-muenchen.de/Child-EU/en/child-eu-register/; Coordinator Matthias Griese, Munich, Germany) as well as the adult European Idiopathic Pulmonary Fibrosis (IPF) registry and biobank (eurIPFreg; http://www.pulmonary-fibrosis.net; Coordinator Andreas Günther, Giessen, Germany). Both, chILD-EU and eurIPFreg, have been implemented on the basis of funding through Frame Program 7 (FP7) of the European Commission (European IPF Network, eurIPFnet, and European pediatric ILD registry and biobank, ChILD-EU).

The ultimate goal of the now initiated eurILDreg is to perform deep phenotyping and extensive biobanking in patients with all kinds of ILD. To this end, we will use a common digital registry platform using a harmonized parameter set, informed consent procedure and data protection concept and thereby profit from the experiences made in the eurIPFreg and ChILD-EU. We will recruit 4000 ILD patients and collect more than 100.000 biomaterials in the next 3 years. Together with the existing patients in the eurIPFreg, the ChILD-EU and in local registries, the eurILDreg, at the end, will include around 6000 patients and 150.000 biomaterials.

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