Designed to meet the Third Health Programme objective to facilitate access to better and safer healthcare for EU citizens, the ERKNet Registry project aims to establish an online platform for the collection of information relevant to patient health and clinical research within the framework of the European Rare Kidney Disease Reference Network (ERKNet).
This will be accomplished by the construction and implementation of a single core registry encompassing all rare kidney diseases in pediatric and adult patients.
The ERKNet Registry will collect at annual intervals (1) a common data set providing basic information about clinical, histopathological and genetic diagnosis, patient status, current kidney function and treatment modality and available biospecimens, and (2) a selected disease-specific set of key performance and outcome indicators. The latter will be defined by the ERKNet workgroups in a structured consensus-building process involving evidence-based guideline review and an iterative Delphi surveys among internal and external experts.
The Registry will contain an automated statistics and benchmarking functionality to allow continuous monitoring and benchmarking of treatment quality, guideline adherence and patient outcomes.
Existing disease- and treatment specific registries used by a major fraction of ERKNet members will be linked to the ERKNet Core Registry to allow data transmission and avoid the need of double entries. A stringent data protection policy will be applied in full compliance with the EU directive and regulation as well as national regulations on patient privacy and data protection, including central peudonymisation with separate storage of medical and patient identifying information.
In summary, we are proposing an innovative Web-based registry solution with a patient-oriented focus on continuous healthcare quality inmprovement by automated performance monitoring and Network wide benchmarking.