Table 3 Future objectives and challenges of the European Rare Kidney Disease Registry and disease-specific sub-registries
From: The European Rare Kidney Disease Registry (ERKReg): objectives, design and initial results
Objectives | Challenges |
|---|---|
Epidemiology of rare kidney diseases Information on level of diagnostic ascertainment (inc. access to genetic testing) Phenotype and natural history information Continuous monitoring of diagnostic and therapeutic performance and guideline adherence for optimized patient outcomes Rapid identification of patient cohorts for clinical trials | Ensuring unbiased representation of the European rare kidney disease population Integration of EUPID pseudonymization system Link with electronic health records for automated data transmission Integration of quality of life data/disease-group specific patient reported outcome measures (PROMs) Long-term sustainability of registry |