Reference: April 2025 | Issue 4 | Vol 11 | Page 35
St Vincent’s University Hospital (SVUH) has been recognised as one of the leading and highest-performing expert centres for rare lung disease in Europe. In an analysis by the European Reference Network for Rare Respiratory Diseases (ERN LUNG), the centre received a rating of excellent.
ERN-LUNG, which is made up of 88 centres across Europe, assessed European healthcare providers across seven key categories, including network activities, academy, clinical patient management system, registry, publications, clinical trial network, and patient-related outcomes (PRO). Of the 88 centres included, St Vincent’s emerged as the top-performing hospital, excelling in all seven categories.
The hospital said the ranking is a testament to its commitment to clinical excellence, research, and patient-centred care. It says the announcement underscores the hospital’s dedication to delivering world-class care for patients with rare lung diseases, ensuring they benefit from cutting-edge treatment and international collaboration.
Prof Michael Keane, Interim CEO, said: “This achievement highlights the dedication of our multidisciplinary teams who work tirelessly to improve the diagnosis, treatment, and care of patients with rare and complex lung diseases. As an integral part of ERN-LUNG, SVUH is ensuring that Irish patients benefit from the highest standard of specialised care, supported by cutting-edge research and international collaboration.”
Prof Cormac McCarthy, Associate Professor and Consultant Respiratory Physician at SVUH, added: “SVUH’s recognition as the highest-performing centre in ERN-LUNG underscores our dedication to rare lung disease research and care. This distinction means that Irish patients are receiving some of the best rare disease treatment in Europe, right here at home. Our participation in ERN-LUNG enables us to engage in pioneering research, access international expertise, and shape the future of rare lung disease treatment, ultimately improving outcomes for our patients.”
SVUH’s participation in ERN-LUNG allows the hospital to access a secure IT platform where complex patient cases can be discussed by expert panels across Europe. This facilitates faster, more accurate diagnoses and ensures patients receive the most advanced treatments available, without the need to travel abroad. SVUH collaborates closely with the Mater and Beaumont hospitals.
The European Reference Networks are a flagship initiative of the European Union, designed to connect the best medical expertise across Europe and ensure that knowledge travels to the patient, rather than the other way around. ERNs are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex and rare diseases that require highly specialised treatment, and concentrated knowledge and resources.
With over 6,000 rare diseases affecting up to 36 million people in the EU, ERNs aim to improve access to high quality care, accelerating diagnosis, and enabling cross-border consultations between medical experts. The EU strategy is to integrate ERNs into healthcare systems, ultimately improving outcomes for patients with rare and complex conditions.
ERN Lung has created a registry data warehouse (RDW) where different existing registries are connected to enable cross-border healthcare within the network. A common dataset (CDS) has been set in order to have common descriptions within the ERN registries. An RDW-based Open Source Registry System for Rare Diseases (OSSE) has also been developed. This includes a Samply Metadata Repository (Samply.MDR) to describe data for the minimal dataset.
The ERN website also contains information on the various ERNs and expert centres. Searches can be restricted to one or more countries or clinical units and the results are displayed as pins on a map with the information listed beneath.
Data from existing registries is not stored in a central database. The RDW uses the approach of a ‘decentral search’ approach and can send requests to the connected registries, whereas only aggregated data is returned about how many patients with specific characteristics are available.
Work is ongoing to connect the different existing registries to the RDW and to begin studies.
