For a number of rare cardiac diseases, no protocol exists for good clinical practices. For others guidelines as to diagnosis and management, to which members of ERN GUARD-HEART previously contributed, exist. However, even for the ‘covered’ diseases the completeness of dissemination may not be optimal: not all (paediatric) cardiologists and other healthcare professionals are adequately trained, not all EU Member States have adopted and shared the protocols. In addition, the segmentation of multidisciplinary expertise is a barrier to the comprehensive care of a patient.

The establishment of a network of Centres of Reference on rare cardiac diseases (ERN GUARD-HEART) will foster concentration of multidisciplinary knowledge and expertise within the EU. Improvements in the delivery of high-quality, accessible and cost-effective healthcare are expected and benchmark opportunities arise to assess quality and safety to support the adoption best practice protocols. Furthermore, multinational collaborative research on rare cardiac diseases will be greatly facilitated, even so for the maximum exploitation of scientific findings to (early) recognise, diagnose and/or treat rare cardiac diseases. At the EU level, current collaborations among renowned Centres of References on rare cardiac diseases are not sufficient to meet the complex challenges of these potentially lethal diseases.

In particular, the five leading principles of the Network (see Missions of ERN GUARD-HEART) comply with five of the objectives contained in the Article 12(2) of Directive 2011/24/EU of the European Parliament and of the Council of 9 March 2011 on the application of patients’ rights in cross-border healthcare, namely:

  • To facilitate improvements in diagnosis and the delivery of high-quality, accessible and cost-effective healthcare for all patients with a medical condition requiring a particular concentration of expertise in medical domains where expertise is rare. The high specialisation of the Network members in the domain of rare and complex heart diseases will allow providing high-quality diagnostic and treatment services to deal with these specific conditions. In addition, the Network includes both general and paediatric hospitals, covering all age groups that can potentially be affected. Another added value is the balanced location of Network centres across Western, Central, and Eastern Europe, which facilitates patient accessibility to healthcare and cross-border patient pathways.
  • To maximise the cost-effective use of resources by concentrating them when appropriate. Economies of scale and concentration of healthcare resources have been considered through a balanced distribution of Network members within countries according to their extension and population.
  • To reinforce research, epidemiological surveillance like registries and provide training for health professionals. A common web-based registry of patients with rare and complex heart diseases will be set up, maintained and exploited, enabling to perform multi-centre research. Likewise, blended training activities (e-learning, webinars and vocal presentations) for health professionals will be organized. Furthermore, the European Society of Cardiology (ESC), Association for European Paediatric Cardiology (AEPC) as well as the European Congenital Heart Surgeons Association (ECHSA) have provided their endorsement to strongly support ERN GUARD-HEART during its network’s lifetime.
  • To facilitate mobility of expertise, virtually or physically, and to develop, share and spread information, knowledge and best practice and to foster developments of the diagnosis and treatment of rare diseases, within and outside the network. Mobility of expertise will be ensured by the organisation of forums both physically as well as virtually, where complex cases will be discussed. E-based consultation service will be offered in a structured way.
  • To encourage the development of quality and safety benchmarks and to help develop and spread best practice within and outside the network. Key activities are to develop an internal benchmarking, collect new evidences, identify best practices and standardize processes in order to improve the quality and safety of care. Improvements will be disseminated internally and externally in line with a global strategy of transparent communication.

The size and geographical diversity of ERN GUARD-HEART, which comprises 44 multidisciplinary clinical expert centres in 16 different EU Member States, guarantees an adequate scale to enable the sharing of expertise and the establishment of cross-border patient pathways, thus contributing to achieve an impact at an European level.