We come from all areas of medicine – we’re specialist cardiologists, molecular and clinical geneticists, pathologists, genetic counsellors, and other associated professional staff. We have clinical representatives all over the country, in Auckland, Hamilton, Tauranga, Palmerston North, New Plymouth, Wellington, Christchurch, Dunedin and Invercargill and are looking to branch out over the country,
Cardiac inherited diseases are a group of heart conditions that can be passed down through families. Through the Cardiac Inherited Disease Registry, CIDG aims to simplify the screening at-risk individuals and families, educate individuals, families and health professionals about cardiac inherited disease and the risk of sudden death, and to develop best-practice guidelines for health professionals.
The Cardiac Inherited Disease Registry Link was initially set up by Jackie Crawford (cardiac technologist- and now national coordinator of this clinical service), Dr John French (Professor of Adult Cardiology now based in Sydney), Dr Jon Skinner, a (Paediatric Cardiologist and Honorary Associate Professor in Child Health, based at Starship Childrens Hospital, Auckland) and Professor Mark Rees, (molecular geneticist now based in Wales). It was initially funded by the Lion Foundation of New Zealand, and is now supported by Cure Kids.
The Registry makes it possible to keep track of the hundreds of families that are scattered around New Zealand and overseas. It helps us to effectively screen those families for inherited heart conditions that can be life-threatening, but show no symptoms. By linking patients to their local experts, we can provide them with preventative therapies and new information on their condition, treatments, and changes in screening. It also gives them a point of contact for support when they need it.
The main research efforts of the Cardiac Inherited Disease Group have focused on the genetic and clinical studies of families in whom sudden unexplained death is prevalent, and particularly with long QT syndrome. This work has been funded mostly by Cure Kids. We have many international working and research collaborations with researchers in allied fields.
If you would like to register your family, receive updates on these conditions or assist us by helping to set up local support groups or making a donation, your contribution in any way would be very welcome.
If you are a physician or allied professional who would like more information or to join our group, please contact us. Regular national meetings are held bi-monthly and there is a network of local contact people, most of whom are listed below, we would welcome your clinical expertise and your representation from your area.
CIDG is proud to be affiliated with the following organisations:
Clinical Leader and CIDG Chair
National and Northern Regional CIDG coordinator
CIDG Administrator/Database Management
Paediatric Cardiology Fellow
David Heaven (South Auckland)
Patrick Gladding and Andy Gavin (Waitemata)
Clinical Molecular Genetics
Molecular and Clinical Genetics