Long QT molecular autopsy in sudden unexplained death in the young (1-40 years old): Lessons learnt from an eight year experience in New Zealand

The CIDG team are pleased to announce our latest research publication detailing our experience of long QT genetic testing in victims of sudden death over an eight year period. The lead author was Dr Luciana Marcondes, our new paediatric heart rhythm specialist at the Starship Children’s Hospital. Bottom line- approximately 20% positive finding in these … Continued

Auckland family living with LQTS – News Hub Interview

Another great interview with one of our families who are living with Long QT Syndrome. Thank you to the Teina, Ruby, Georgia and Mandy for sharing your family’s story with us and continuing to help raise awareness of LQTS within the wider community. And Georgia we think your ICD-friendly sports bra design so your sister … Continued

Professor Skinner’s Inaugural Lecture

On the 16th August 2017 Dr Jon Skinner, our esteemed clinical lead at CIDG became Professor Jon Skinner and gave his inaugural lecture. Take a look below;  

How to measure a QT interval – PDF

We are delighted to highlight a new article guiding professionals how best to assess the QT interval. This should help improve communication between professionals and help avoid over and under diagnosis of long QT syndrome.   How to measure a QT interval

Live-HCM and Live-LQTS Study invitation

Do you want to be involved in an international study? Are you gene positive or have a clinical diagnosis for HCM or LQTS? Are you registered with CIDG and live in the Auckland/Northland area? Are you aged between 8 and 60 years? This is your opportunity to join an international research collaboration looking at activity … Continued

Another article of interest. Written by Jeanne Erdmann and published in 2013, Erdmann looks at the importance of ‘molecular autopsies’ in cases of sudden death in young people. Professor Skinner makes an appearance near the end of the article telling how we are very fortunate in New Zealand to receive funding by the Ministry of … Continued

Radio New Zealand Article

On Radio New Zealand’s Dateline Pacific Ms Matafai shared her story of being diagnosed with Long QT Syndrome and why it is important that we raise awareness of this disease in the wider NZ and Pacific community. Detect. Protect. Enable. http://www.radionz.co.nz/international/programmes/datelinepacific/audio/201843486/samoan-mother-wants-more-awareness-of-long-qt

Dr Annika Winbo and her ground-breaking research

Did you see CIDG on the news last night? Yesterday we were very fortunate to be able to share with the amazing team and donors at Cure Kids Dr Annika Winbo’s cutting-edge research into Cardiac Inherited Diseases, particularly Long QT Syndrome. If you were at last year’s CIDG family event you would have seen Dr Winbo’s talk … Continued