Heart-Core Registry: organization structure and different key components

The organizational structure of the Heart-Core registry project is designed in a way to facilitate planning, organising, leading and controlling the efforts and resources of the project to achieve its goals. The structure is also designed not only to facilitate the objectives and the planned activities, but also to promote close and effective interaction with the different components of the ERN GUARD-Heart governance structure. This will enable the Heart-Core Registry project to benefit from the hard-won experience and dedicated resources of the internal project management structure of ERN GUARD-Heart.


Key components of the organization of the Heart-Core Registry project are the following:

  • The Coordinator of the Heart-Core Registry project is also the coordinator of the ERN GUARD-Heart (Arthur A.M. Wilde, Academic Medical Center, Amsterdam, Netherlands).
  • The Project Management Office (PMO) consists of two part-time project managers (Nynke Hofman and Ahmad S. Amin) who are also involved in the project management structure of the ERN GUARD-Heart and thereby have access to its dedicated resources. Both project managers are located at the coordinating centre of the Heart-Core Registry project (i.e., Academic Medical Center, Amsterdam, Netherlands).
  • The Steering Committee consists of the coordinator, leaders of the 3 thematic areas of the ERN GUARD-Heart, i.e., familial electrical diseases (Carlo Napolitano, Instituti Clinici Scientifici Maugeri, Pavia, Italy), familial cardiomyopathies (Philippe Charron, Assistance Publique Hôpitaux de Paris, Paris, France), and special electrophysiology conditions in children (Georgia Sarquella-Brugada, Hospital Sant Joan de Déu Barcelona Children’s Hospital, Barcelona, Spain), and the chair of the Patient Advocacy Group of the ERN GUARD-Heart (i.e., Ruth Biller, Germany).
  • The Expert Working Groups will consist of the leaders of ongoing and future condition-specific registries of the ERN GUARD-Heart, who will be supported by an IT expert and a registry/data expert.
  • The Advisory Panel will consist of a medical expert, a data expert, an IT expert, and a patient representative from the Patient Advocacy Group of the ERN GUARD-Heart.
  • The Registry Evaluation Body will consist of 2 medical rare disease experts, and patient representative from the Patient Advocacy Group of ERN GUARD-Heart.

Roles and Responsibilities

  • The coordinator coordinates the preparatory work which will outcome with the plan for organization and the objectives of the Heart-Core Registry project, contracts the appropriate resources, defines process, output and outcome indicators to monitor the progress of the project, and facilitates the assessment of the project based on the defined indicators.
  • The Project Management Office (PMO) assists the coordinator in the preparatory work and timely delivery of the plan for organization, integrates all reports describing the progress of the activities of the project, takes care of the day-to-day operational management tasks, and performs organising, monitoring, and controlling activities to produce the intended deliverables and implement them in the project organisation.
  • The Steering Committee provides general direction and guidance, keeping the project focused towards its objectives. It reports to the Coordinator and closes closely with the PMO.
  • The Expert Working Groups carry out the project work, producing the deliverables and implementing them in the project organisation. Expert working groups are supported by dedicated resources contracted by the Coordinator.
  • The Advisory Panel will facilitate the implementation of best practice, provide vital advice and support to improve the efficiency and sustainability of the Heart-Core registry, and identify potential unseen obstacles, thereby significantly increasing the chance of successful implementation of the Heart-Core registry and the relevance of its outputs.
  • The Registry Evaluation Body supports the Coordinator and the expert working groups in the quality assessment, evaluation and improvement of the registry service.