Inherited Disease Registry
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
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;
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
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