Inherited Disease Registry
Another great article published recently by Associate Professor Katharine Wallis from the University of Queensland. Bad Gene Hunting – Sudden Unexplained Death and Familial Long QT Syndrome
Did you catch “The rhythm of the heart” article in the Listener? About Dr Annika Winbo’s research into Long QT Syndrome and cell abnormalities. Listener Article Feb 29 2020
https://i.stuff.co.nz/national/health/115987960/video-games-can-be-as-dangerous-as-playing-sports-new-research-reveals A news item about Dr Skinner’s latest article, Syncope due to Ventricular Arrhythmia Triggered by Electronic Gaming published in the latest edition of the prestigious New England Journal of Medicine.
Its official, grapefruit juice is potentially dangerous for subjects with long QT syndrome! In a study from Israel, subjects were asked to drink 2L of grapefruit juice a day (not everyone can do that!…), and when they did, they put out their QT interval by an average or more than 20ms. If a new medication … Continued
Outcomes from patients in the New Zealand Cardiac Inherited disease registry have contributed to a significant piece of research regarding the use of ICDs (implantable defibrillators) in patients with CPVT (paper linked below). Patients tended to do worse with an ICD. It is important to note that this does not mean that ICDs should never … Continued
We are delighted to invite you along to CIDG’s public family evening on 30th November 2018. Following the last very successful family information evenings, we are delighted to offer another family session this year and we would love you to attend. The feedback we received from last year’s meeting has enabled us to put together … Continued
After the sudden unexpected death of a young person, a high quality autopsy may reveal a cause which may run in a family. If it is found, family can be protected, if missed, they cannot. The national CIDG executive are very concerned about the Ministry of Justice plans for Forensic services. Iwi in Taranaki are … Continued
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
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