Heart-Core Registry: work packages

List of work packages with short description.

WP No. WP Title WP Description
WP. 1 Management and Coordination Coordinating the preparatory work which will outcome with the plan for organization and objectives of the Heart-Core Registry, contracting of appropriate resources, taking care of the day-to-day management activities and administrative tasks, facilitating optimal performance of Heart-Core Registry as an interoperable and fully operational registry visible to target groups, e.g., by informing target groups and members of the ERN GUARD-Heart on how to obtain access to the Registry, how to use the Registry, how to participate in the Registry and assisting in the assessment of the Registry according to defined indicators.
WP. 2 Dissemination and Communication Increasing the visibility of Heart-Core Registry and in particular its achieved results to stakeholders through a global communication and dissemination strategy and the implementation of effective internal and external communication channels.
WP. 3 Quality Assurance and Monitoring Ensuring that the Heart-Core Registry project is implemented according to the planned activities by monitoring the performance of the project using process, output and outcome indicators. Enabling assessment of the Heart-Core Registry based on the indicators. Guaranteeing that high-quality data are collected by identifying data quality dimensions and indicators and performing quality audits using the dimensions and indicators.
WP. 4 Semantic Interoperability and Data collection Achieving high level of semantic interoperability in the Heart-Core Registry to maximize its utility, enabling communication and meaningful comparisons of its data with data from other registries, and reaching better effectiveness of registry information.
WP. 5 Legal and Confidentiality Aspects Adopting a gold standard, transparent data protection practice that facilitates the protection and enhancement of the right to privacy of patients in the Heart-Core Registry and safeguards compliance with national and European data protection regulations.