EurILDReg Project- European ILD Registry and Biobank
Research type
Research Study
Full title
EurILDreg - European ILD Registry and Biobank
IRAS ID
343892
Contact name
Nikhil Hirani
Contact email
Sponsor organisation
Giessen
Clinicaltrials.gov Identifier
DRKS00028968, German Clinical Trials Register
Duration of Study in the UK
2 years, 11 months, 30 days
Research summary
Interstitial lung diseases (ILD) is an umbrella term to describe many different types of lung inflammation and scarring (fibrosis). The commonest ILDs are idiopathic pulmonary fibrosis (IPF) and sarcoidosis, but there are dozens of rare types of known and unknown cause. Many ILDs are fatal and are associated with poor quality of life and the treatments are limited. We don't know enough about the cause of ILDs, the impact of diseases on patients and we need to discover new drugs with fewer side-effects. The European ILD Registry is mainly aimed at 1) describing the course of ILDs in terms of symptoms and clincial measurements and 2 the molecules and genes that cause ILDs and determine progression of disease. The project will involve questionnaires, collecting clinical data and acquiring samples from patients for analysis. Most of the clincal data and patient samples will be acquired during routine clincal care, but there are some procedures that are extra to routine care and these will be clearly presented to the patients. We aim to share data and samples with authorised researchers from universities and industry in a secure coded form such that individual partcipants cannot be identified.
REC name
East of England - Cambridge Central Research Ethics Committee
REC reference
24/EE/0244
Date of REC Opinion
7 Oct 2024
REC opinion
Further Information Favourable Opinion