Heart-Core Registry: stakeholders
Target groups of the Heart-Core Registry are all players (stakeholders) that have a major role in the rare disease community, including:
· Clinicians, who are expected to benefit from improved access to high-quality data on disease prevalence, presentation and outcomes on high numbers of patients rapidly.
· Healthcare providing organizations, that might benefit from the Heart-Core registry by using the data to compare their services with other healthcare providers.
· Researchers and European academia entities, to whom the Heart-Core Registry will provide high-quality standardized data to reinforce research and strengthen teaching in the field of rare heart diseases.
· Public health care systems, benefiting from the Heart-Core Registry to assess the degree to which clinicians are managing a rare heart disease in accordance with guidelines and/or to focus attention on specific aspects of a particular disease.
· Pharmaceutical and medical device companies, that can benefit from the Heart-Core Registry to identify patients that will be eligible to participate in research studies or trials.
· The European Commission and independent assessment bodies, that might use the data to efficiently evaluate, monitor and assess ERN GUARD-Heart as foreseen in the ERN implementing decision.
· Other ERNs, that deal with rare, low-prevalence and complex diseases linked with rare cardiac conditions (e.g. rare cardiac tumours, cardiac transplantation, Fabry disease, cardiac amyloidosis, and neuromuscular diseases).
· Patients and their families, who are expected to benefit from registry-based research outcomes and consequently increased quality and safety of healthcare related to rare and complex heart diseases.