Development of a cardiac inherited disease service and clinical registry: A 15-year perspective

Abstract

Inherited heart conditions are a major cause of sudden unexpected death in young people. This paper describes how New Zealand's (NZ) cardiology and genetics communities responded to the challenge of detecting individuals at risk. The Cardiac Inherited Diseases Group (CIDG), initially comprising four people, developed a national multidisciplinary network, genetic testing, and the world's first national and fully funded molecular genetic autopsy service (using genetic testing to ascertain cause of death). This was underpinned by a national, ethically approved consent based registry for inherited heart conditions and sudden death—the Cardiac Inherited Diseases Registry New Zealand (CIDRNZ). Here we present the timeline for the registry's development and key features that may be useful for others developing their own cardiac inherited disease service.