TY - JOUR
T1 - Development of a cardiac inherited disease service and clinical registry
T2 - A 15-year perspective
AU - Earle, Nikki J.
AU - Crawford, Jackie
AU - Hayes, Ian
AU - Rees, Mark I.
AU - French, John
AU - Stiles, Martin K.
AU - Waddell-Smith, Kathryn E.
AU - Donoghue, Tom
AU - Monkley, Rachael
AU - Neas, Katherine
AU - Aitken, Andrew
AU - Tse, Rexson
AU - Love, Donald R.
AU - Skinner, Jonathan R.
AU - The Cardiac Inherited Diseases Group
AU - Armishaw, Jeremy
AU - Binfield, Alex
AU - Butler, Stephen
AU - Chong, Belinda
AU - Denmark, Lloyd
AU - Eaton, Jenny
AU - Eddy, Carey-Anne
AU - Gerber, Ivor
AU - Gibson, Kate
AU - Graham, Amanda
AU - Heaven, David
AU - Hedge, Madhuri
AU - Leong, Leong
AU - Chung, Seo-Kyung
AU - Hood, Margaret
AU - Maxwell, Fraser
AU - Monkley, Rachael
AU - Monson, Louise
AU - Morrow, Paul
AU - O'Donovan, Claire
AU - Painter, Liz
AU - Prosser, Debbie
AU - Snow-Bailey, Karen
AU - Shelling, Andrew
AU - Smith, Warren
AU - Stables, Simon
AU - Stewart, Jim
AU - Ternouth, Ian
AU - Tisch, Jonathan
AU - Webster, Nikki
AU - White, Kate
AU - Winbo, Annika
PY - 2019/3
Y1 - 2019/3
N2 - 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.
AB - 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.
KW - Inherited heart conditions
KW - cardiology
KW - genetics
UR - http://www.scopus.com/inward/record.url?scp=85062824034&partnerID=8YFLogxK
U2 - 10.1016/j.ahj.2018.11.013
DO - 10.1016/j.ahj.2018.11.013
M3 - Letter
C2 - 30686478
AN - SCOPUS:85062824034
SN - 0002-8703
VL - 209
SP - 126
EP - 130
JO - American Heart Journal
JF - American Heart Journal
ER -