Inherited Disease Registry
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
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
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
CIDG have published their data on the national registry of inherited heart conditions. There are huge variations by region. The south island, which still does not have a coordinator, has a registration rate four times lower than the north island. This must mean that many people at risk remain undetected and unprotected. It is time … Continued
As you may know, Tuatara Brewing have been releasing a special memorial brew the past three years in memory of their much loved mate and colleague Matt Lang who passed away suddenly in December 2013. All proceeds from these brews have gone towards buying AED’s that have been so kindly donated to Auckland Hospital Clinical … Continued
After our successful first CIDG Family information evening last year we are pleased to be able to host another one this year. This year’s theme is based around our motto; “Detect. Protect. Enable.” and will be looking at “The Family Journey” into Cardiac Inherited Disease. When: 16th September. 17.30 – 19.30 Where: Crowne Plaza Hotel, … Continued
Did you watch TV3 last night? The brave Poupouare whanau talk about their heartache of losing their son Elliott, at just 17 years of age. Dr Jon Skinner, our clinical lead, is also talking about sudden cardiac death and our goal to make genetic testing compulsory in young people, when no cause of death is … Continued