The Launch of the ERN GUARD-HEART
ERN GUARD-HEART is an ERN on rare and complex diseases of the heart and on cardiac conditions that require highly specialised interventions. The Network, as the ERN is also referred to, was officially launched on 1 March 2017, and the kick-off meeting took place in Vilnius on 9 March 2017. During this meeting, on behalf of the Network, its Coordinator, Dr. Arthur Wilde from the Academic Medical Centre (Amsterdam, Netherlands) gave an introductory presentation to inform and update the Representatives of participating Healthcare Providers (HCPs) and other stakeholders on the mission, structure, governance, the intended methods, and pre-defined deliverables of the Network, and pointed to future opportunities, concerns and possible pitfalls of the ERN initiative.
The size and geographical diversity of ERN GUARD-HEART, which comprises 24 multidisciplinary highly specialised HCPs in 12 EU Member States, guarantees an adequate scale to enable the sharing of expertise and the establishment of cross-border patient pathways. Based on the clinical guidelines of the European Society of Cardiology (ESC), the International Classification of Diseases (ICD10) and ORPHANET, the Network has identified 3 thematic areas: familial electrical diseases, familial cardiomyopathies, and paediatric special conditions. The Network is seeking to strengthen coordination of expertise and resources to facilitate pooling of multidisciplinary knowledge. By fostering closer cooperation between experts, new scientific knowledge will be acquired and shared to support the development of new diagnostic and therapeutic procedures.
During the kick-off meeting, Dr. Elijah Behr, the Representative of the HCP St. George’s University Hospitals NHS Foundation Trust (London, UK) presented a potential model for the ERN GUARD-HEART, based on the activities of the Association for Inherited Cardiac Conditions (AICC), to deliver education and training programs to European clinicians, interact with national patient interest groups, and to collect data for research and to interact with existing working groups where objectives are shared.
At the meeting in Vilnius, Representatives of the participating HCPs agreed on the importance of constructing a team of patient-representatives for the Patient Advocacy Board, as specified in the ERN grant application, and decided to provide their suggestions with regard to relevant national patient organizations and names of candidate patient representatives in an online google spreadsheet that was made by the Management Office of the Network. In addition to this, to arrange a 2nd meeting for the HCP Representatives another Google-spreadsheet was created to identify the availability of the HCP Representatives for future international cardiology conferences. Finally, as establishment of ERN-wide registries of patients with rare and complex heart diseases is one of the main objectives of the Network and the EU, the HCP Representatives agreed upon the initiation of a registry of patients with long QT syndrome types 4 -16, for the purpose of a grant application led by Dr. Georgia Sarquella-Brugada, the Representative of the Hospital Sant Joan de Déu (HSJD) – Barcelona’s Children Hospital (Barcelona, Spain) and leader of the thematic area ‘paediatric special conditions’.