The Cardiac Inherited Disease Group (CIDG) is a New Zealand National multidisciplinary group made up of specialist cardiologists, molecular and clinical geneticists, pathologists, and genetic counsellors and associated professional staff whose main aim is to prevent sudden cardiac death due to inherited heart conditions in the young. There are clinical representatives of CIDG in Auckland, Hamilton, Tauranga, Palmerston North, New Plymouth, Wellington, Christchurch and Dunedin. Their names are listed at the foot of this page.

Cardiac inherited diseases are a group of heart conditions that can be passed down through families from one generation to another. These diseases include long QT Syndrome, Brugada Syndrome, Dilated Cardiomyopathy, Hypertrophic Cardiomyopathy and arrhythmogenic right ventricular cardiomyoapthy . Information about these diseases are found on this website and useful links are provided.

CIDG aims to facilitate screening of at risk individuals and families, and to provide education to individuals, families and health professionals about cardiac inherited disease and risk of sudden death, and to develop best practice guidelines to enhance professional practice in this field.

Another key aim of the group is to develop a truly national service that is, ultimately, government funded. In order for us to do this we need to establish the incidence of these diseases in the New Zealand population, and demonstrate that we can save lives through simple clinical best practice, including the clinical application of molecular genetics, as new genes are discovered by research scientists throughout the world.

There is little reliable statistical information available throughout the world relating to the incidence of sudden unexpected death in the young. However data from the U.S.A suggests that the incidence is greater than that of childhood leukaemia. Recent data from Australia suggests a minimal incidence of 20 deaths per million per year in the infant to 35 year age group-ie more than 100 per year in New Zealand. Until population based studies are forthcoming, and post mortem data is better categorised, the true incidence will not be known. Around the world there is a strong impetus to gather better data, in the UK this is being led by “CRY”- cardiac risk in the young, and in several countries by “SADS“- sudden arrhythmic death syndromes group. Both of these groups are lead by individuals from families affected by these conditions, and by eminent medical professionals, research scientists and prominent sporting personalities- such as Ian Botham in the UK.

The cardiac inherited disease database was initially set up by Jackie Crawford (cardiac technician- and now coordinator of this clinical service), Drs John French (Professor of Adult Cardiology now based in Sydney), 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). The registry development was funded by the Lion Foundation of New Zealand, and is now supported by Cure Kids. Without a working registry it would be impossible to keep track of the hundreds of families that are scattered around New Zealand and overseas.

The aim of keeping a registry is to ensure that our families are kept informed about new information and changes in screening, and treatments that are available for these conditions. Another function of the registry database is to ensure that an appropriate specialist screens everyone who requires it as often as required, but also to ensure that families have a ‘link’ that enables them to access support and assistance when they require it. The database also assists doctors; it is impossible to memorise all the family information, the number of surnames alone within a family quickly become overwhelming. Doctors can quickly access relevant information when they need to.

Currently the main research efforts of the Cardiac Inherited Disease Group have been focused on the genetic 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“. CIDG is working closely with TRAGADY, the Trans-Tasman Response Against sudden Death in the Young. Other members of TRAGADY include the genetics working group of the Cardiac Society of Australia and New Zealand, SADS Australia, and the Australia and New Zealand Childrens Heart Research Centre. TRAGADY are coordinating best clinical practice documents pertaining to the prevention of young sudden death. A study looking at the causes of Sudden Death in the Young in New Zealand and Australia is in development. CIDG has many international working and research collaborations with researchers in allied fields. It is hoped these will greatly benefit families in New Zealand.

Much work is needed just to keep pace with new discoveries.  As new genes responsible for these conditions are being found and more clinical information on the progression of these diseases is being published, it is vital that this information is made available to those New Zealanders with these conditions, and to those caring for them. Disseminating such findings is a core part of our work.

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 who would like to join our group please do not hesitate to contact us. Regular National meetings are held monthly, there is a network of local contact people most of whom are listed below.

CIDG members- 2009

Auckland:  Jackie Crawford (clinical coordinator), Debbie MacCallum (team support/database management) Jon Skinner, Jim Stewart, Ivor Gerber, David Heaven (South Auckland), Margaret Hood, Warren Smith, Patrick Gladding, Nigel Lever, Colin Edwards (Waitemata) (cardiology); Ian Hayes, Jennifer Warrington (Clinical Genetics); Andrew Shelling, Mark Rees, Carey-Anne Eddy (molecular genetics- university); Donald Love (clinical molecular genetics, Lab Plus); Judith MaCormick (clinical research fellow). (Lloyd Denmark (pathology).

Hamilton:  Fraser Maxwell (paediatrics), Martin Stiles, Spencer Heald, Dilesh Jogia (Cardiology).
 

Tauranga:  Jeremy Armishaw (paediatrics), Jonathan Tisch (cardiology)

New Plymouth:  Paul Butler (paediatrics), Ian Ternouth (cardiology) James Hunt (pathology)

Palmerston North: Nicola Webster (paediatrics), John Campbell-MacDonald (cardiology), Kate White (pathology)

Wellington: Kate Neas (clinical genetics), Andrew Aitken (cardiology), Jane Zuccullo (pathology)

Christchurch: Ian Crozier, Iain Melton (cardiology), Martin Sage (pathology), Alice Christian (clinical genetics).

Dunedin:  Pam Jackson (paediatrics); Mike Williams (cardiology); Steve Robertson (molecular and clinical genetics).