Heart-Core Registry: geographical coverage
The Heart-Core Registry will be developed by the ERN GUARD-Heart. All members of the ERN GUARD-Heart will be able to participate in the project and contribute data to the registry depending on their area of expertise. The current focus of the member HCPs is on genetically transmitted heart diseases and several specific procedures in paediatric patients.
In addition, ERN GUARD-Heart has recently initiated a collaboration with 11 affiliated partners from 9 (additional) EU Member States (i.e., Austria, Croatia, Estonia, Hungary, Lithuania, Luxembourg, Malta, Slovakia, and Slovenia). Affiliated partners act as hubs at national level in the area of expertise of the ERN. Where cases cannot easily be dealt with at national level they can be considered for referral to the ERN GUARD-Heart through the affiliated partner. In this way, affiliated partners increase the geographical coverage and the accessibility of the ERN GUARD-Heart to patients in a more equitable way. Identification and selection of affiliated partners falls under the exclusive competence of the Member States taking into account their individual situation and planning. Furthermore, in 2020, pending EU regulation on the extension of ERNs and inclusion of new member HCPs, ERN GUARD-Heart will be open to other HCPs with a focus on congenital heart diseases and other (mainly non-familial) rare cardiac diseases, conditions. It is expected that after inclusion of new HCPs as full members, the ERN GUARD-Heart will have a full member or an affiliated partner in at least 24 EU Member States, that will be ready to contribute to the Heart-Core Registry project. The size and geographical diversity of the Network and its collaborations with affiliated partners from Member States with no full members in the ERN guarantees an adequate scale to enable the sharing of data and the establishment of an overarching registry for rare or low prevalence cardiac conditions and diseases, to reach the earlier mentioned target groups and to achieve an impact at European level.