Am Heart J. 2018 Dec 19. pii: S0002-8703(18)30347-8. doi: 10.1016/j.ahj.2018.11.013. [Epub ahead of print]
Development of a cardiac inherited disease service and clinical registry: A 15-year perspective.
Earle NJ1, Crawford J2, Hayes I3, Rees MI4, French J5, Stiles MK6, Waddell-Smith KE2, Donoghue T7, Monkley R6, Neas K8, Aitken A7, Tse R9, Love DR10, Skinner JR11; Cardiac Inherited Diseases Group.
In 2002, the Cardiac Inherited Diseases Registry New Zealand was established with an associated clinical service, in order to identify pre-symptomatic people with inherited heart conditions, enable tracking of families, and collate data. We describe the establishment of this registry and discuss the key features, including dedicated coordinators, links to a multidisciplinary and collaborative clinical service, a translational research program, a secure web-based database, and governance encompassing ethical and cultural approval.
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