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. 2024 Nov 18;24(1):572.
doi: 10.1186/s12890-024-03389-9.

Protocol and research program of the European registry and biobank for interstitial lung diseases (eurILDreg)

Ekaterina Krauss  1   2 , Silke Tello  1   2 , Jennifer Naumann  1 , Sandra Wobisch  1 , Clemens Ruppert  1 , Stefan Kuhn  1 , Poornima Mahavadi  1 , Raphael W Majeed  1   3 , Philippe Bonniaud  4 , Maria Molina-Molina  5 , Athol Wells  6 , Nik Hirani  7 , Carlo Vancheri  8 , Simon Walsh  9 , Matthias Griese  10 , Bruno Crestani  11 , Andreas Guenther  12   13   14   15   16   17 ; further eurILDreg investigators; RARE-ILD investigators
Collaborators, Affiliations

Protocol and research program of the European registry and biobank for interstitial lung diseases (eurILDreg)

Ekaterina Krauss et al. BMC Pulm Med. .

Abstract

Background and aims: Interstitial lung diseases (ILDs), encompassing both pediatric and adult cases, present a diverse spectrum of chronic conditions with variable prognosis. Despite limited therapeutic options beyond antifibrotic drugs and immunosuppressants, accurate diagnosis is challenging, often necessitating invasive procedures that may not be feasible for certain patients. Drawn against this background, experts across pediatric and adult ILD fields have joined forces in the RARE-ILD initiative to pioneer novel non-invasive diagnostic algorithms and biomarkers. Collaborating with the RARE-ILD consortium, the eurILDreg aims to comprehensively describe different ILDs, analyze genetically defined forms across age groups, create innovative diagnostic and therapeutic biomarkers, and employ artificial intelligence for data analysis.

Methods: The foundation of eurILDreg is built on a comprehensive parameter list developed and adopted by clinical experts, encompassing over 1,800 distinct parameters related to patient history, clinical examinations, diagnosis, lung function and biospecimen collection. This robust dataset is further enriched with daily assessments captured through the patientMpower app, including handheld spirometry and exercise tests, conducted on approximately 350 patients over the course of a year. This approach involves app-based daily assessments of quality of life, symptom tracking, handheld spirometry, saturation measurement, and the 1-min sit-to-stand test (1-STST). Additionally, pediatric data from the ChILD-EU registry will be integrated into the RARE-ILD Data Warehouse, with the ultimate goal of including a total of 4.000 ILD patients and over 100.000 biospecimen.

Discussion: The collaborative efforts within the consortium are poised to streamline research endeavors significantly, promising to advance patient-centered care, foster innovation, and shape the future landscape of interstitial lung disease research and healthcare practices.

Trial registration: EurILDreg is registered in the German Clinical Trials Register (DRKS 00028968, 26.07.2022), and eurIPFreg is registered in ClinicalTrials.gov (NCT02951416).

Keywords: European Registry and Biobank for Interstitial Lung Diseases; Idiopathic Pulmonary Fibrosis; Interstitial Lung Disease; eurILDreg; eurIPFreg.

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Conflict of interest statement

Declarations Ethics approval and consent to participate The ethics committee of the Justus Liebig University of Giessen has approved the eurILDreg as extension of eurIPFreg under protocol reference number 111/08. Additionally, approval from the medical ethics committee at each participating site will be obtained prior to patient inclusion. Written informed consent will be obtained from all participants. The study will be conducted in accordance with the Declaration of Helsinki. Consent for publication All authors gave their consent for publication. Competing interests The authors declare no competing interests.

References

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