Patient-reported outcome measures (PROMs) capture patients’ own perspectives on their health and are crucial for improving care, yet they remain underused in clinical practice due to barriers like time constraints, language availability, and licensing costs.
The European Reference Center for Rare Lung Diseases (ERN LUNG) is launching an ambitious initiative to implement a standardized PROM (EQ-5D-5L for adults, EQ-5D-Y-5L for children) across all the European Reference Network patient populations.
This questionnaire:
- Assesses general health (not disease-specific)
- Is short and available in all European languages
- Can be completed electronically with direct data transfer to European Reference Network registries
- Will be provided free of charge by EuroQol
- Can complement existing disease-specific Patient-Reported Outcome Measures used by Core Networks
Patients will complete it annually, creating valuable data for clinical research and audit purposes.
The project will be discussed at the European Reference Network Annual Board Meeting in Paris, March 2026, where stakeholder input is welcomed.
