ERNICA-registry for improving care

ended

There is currently no European registry available to capture core outcome data from patients with the rare and/or complex diseases covered by ERNICA. To improve care across Europe and reduce health inequalities, this is key. Whilst local and national registries exist for some of these rare diseases, there is no standardised approach across Europe. This results in multiple, smaller-scale data sets that are fragmented and not comparable, making it difficult to monitor patient trajectories on a European level, benchmark optimal care and carry out meaningful clinical research. This project will build upon the existing registry infrastructure in the Netherlands, hosted by the Dutch Institute of Clinical Auditing (DICA). This registry covers six ERNICA-covered anomalies. The objectives of this proposal are to revise the existing registry, implement the JRC Set of common data elements for rare disease registration, expand the registry’s use to other non-Dutch ERNICA healthcare providers (HCPs), achieve inter-operability with other existing registries in Europe, develop a dashboard for data collection and analysis and eventually, make the registry available to non-ERNICA centres. The registry will involve the prospective collection of a pre-natal, post-natal and longer-term data set (common and disease-specific). ERNICA HCPs will input grouped and un-identifiable data locally. Every 6 months, HCP’s results will be made available to them, alongside group averages. Annually, results will be presented at a board meeting. Benchmarking outcomes will help ERNICA clinicians to identify best practice and improve patient care. A strategy is in place to ensure these learning points are appropriately disseminated. This project will standardise and pool together relevant and meaningful patient data across Europe, helping to identify optimal, cost-effective care for the benefit of HCPs and ultimately, their patients.