Inherited Disease Registry
Information for Individuals and Families Tēnā koutou katoa Thank you for checking the site to find out more about the recently publicised cyber security incident that has impacted access to the Cardiac Inherited Disease Registry. What we know so far An IT service provider we work with has experienced a cyber security incident which has … Continued
Cyber security incident impacting access to data – December 2022 Please read the below link regarding Cyber security incident, and stay in touch with the information as it gets updated: Cyber security incident impacting access to data – Te Whatu Ora – Health New Zealand
New Research Article: Dr Annika Winbo We present the first study of patient-derived LQT1 sympathetic neurons that are norepinephrine secreting, and electrophysiologically functional, in vitro. Our data reveal a novel LQT1 sympathetic neuronal phenotype of increased neurotransmission and excitability. The identified sympathetic neuronal hyperactivity phenotype is of particular relevance as it could contribute to the … Continued
CIDG are pleased to be working with Heart Kids NZ to help provide support for our Heart families and children. Heart Kids is a charity dedicated to improving the lives of families with one or more child living with a heart condition, and they receive no government funding. They rely solely on the generous support … Continued
Did you catch our own Dr Stiles from Waikato in the news, sharing his wonderful research into CID? This article, led by Dr Stiles, is the 2020 Asia Pacific Heart Rhythm Society/Heart Rhythm Society Expert Consensus Statement on the Investigation of Decedents with Sudden Unexplained Death and Patients with Sudden Cardiac Arrest, and of Their … Continued
An interesting read that may be helpful for patients with NZ Health Insurance. NZ Health insurers policy on Genetic testing
The CIDG team are pleased to highlight this article in the very influential heart journal, the Journal of the American College of Cardiology. We thank all the more than 4000 participants on this registry for allowing this to happen. Doctors around the world are learning from the information you have allowed us to collate. Unique … Continued
The cardiac society of Australia and New Zealand has released guidelines for the management of patients with cardiac inherited diseases during the COVID -19 pandemic. CSANZ-Consensus-statement-for-patients-with-Genetic-Heart-Disease-and-COVID-19.pdf
Special advice for people with Cardiac Inherited Disease during the COVID-19 pandemic: Long QT Syndrome (LQTS): There is nothing to suggest that those persons with LQTS who develop Covid-19 infection have a different clinical course than those without LQTS. BETA BLOCKERS (SUCH AS NADOLOL, ATENOLOL, BISOPROLOL AND METOPROLOL ARE SAFE AND SHOULD BE CONTINUED. As … Continued