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Cardiac Inherited Diseases Service

Public Service, Cardiology, Paediatrics

Today

10:00 AM to 2:00 PM.

Description

What is CIDG and CIDRNZ?

CIDG is a national network of specialist clinicians and scientists working to prevent sudden death due to inherited heart diseases.  The Cardiac Inherited Disease Registry N.Z. (CIDRNZ) is an ethically approved national clinical registry designed to track registrants (individuals and families with known cardiac inherited disease) or cases of young sudden death typically 1 - 40 yrs (referred by the Forensic Pathologists/Coroner). 

Each CIDG member has their own employing hospital or District Health Board. Aside from the coordinators based within ADHB, Waikato DHB and Capital and Coast DHB, CIDG does not receive individual funding, but works within existing clinical systems to facilitate clinical screening for families across the country.

Which Cardiac Inherited conditions does CIDG deal with?

The commonest familial heart conditions are Long QT syndrome (LQTS), Brugada syndrome (BRS), Hypertrophic Cardiomyopathy (HCM), and Dilated Cardiomyopathy (DCM). CIDG also coordinates nationally the family and genetic investigation for sudden unexpected natural deaths in 1-40 year olds. CIDG works closely with the national forensic and coronial services.   Advice can be provided in cases of resuscitated sudden cardiac arrest 1 - 40 year old age group, assistance with DNA storage and provocation tests that may assist with diagnosis. Contacts: Dr Luciana Marcondes Paediatric Cardiology, Dr Andrew Martin Adult Cardiology. Clinical Coordinator will normally be able to assist you.

Who leads CIDG?

The national clinical leader is Dr Andrew Martin Adult Heart Rhythm Specialist and he is supported by Dr Luciana Marcondes Paediatric Heart Rhythm Specialist, Dr Miriam Wheeler Adult Cardiomyopathy Specialist and Dr Ivor Gerber Adult Cardiomyopathy Specialist. 

Which doctors belong to CIDG?

A group of clinicians from each region belong to CIDG, and these can be found on the CIDG website (www.cidg.org.nz). The majority are Cardiologists (heart doctors), Paediatricians, Geneticists and Pathologists. 

Is this just for children?

No, CIDG facilitates family screening for all family members. The clinical tests to diagnose heart problems, are usually performed in your local Hospital. Children sometimes have specialised heart tests at the Starship Hospital and test results can be copied and sent to other specialists for opinion.

Are referrals able to be made?

Yes we are able to receive e referrals from GPs and Consultants.   Please choose the Auckland Hospital and search Cardiac Inherited Disease Service.  You can then type in your referral.  
When making a referral be sure to include any pertinent family history. 

Consultants

Ages

Child / Tamariki, Youth / Rangatahi, Adult / Pakeke, Older adult / Kaumātua

How do I access this service?

Referral

Electronic referrals can be made via the Auckland Hospital E referrals portal.  Cardiac Inherited Disease Service.  When making the referrals please include a thorough family history. Contact cellphone and email address for the family contact person should also be included.

Referral Expectations

Patients / Families:  If you suspect that you or your family may have a cardiac inherited condition your first port of call should be to your GP to discuss this - importantly take any information you have about this to the GP at that time.  Your GP can, after discussion with you, make a referral on your behalf. We are unable to provide clinical advice over the phone and when referrals come in our Coordinator Staff will often telephone or email you for further information or clarification.   If you are under a Specialist for review again feel free to discuss this with them and they can also refer you and your family to the service.

We hold periodic case meetings where information can be shared with Geneticists, Pathologists, Paediatricians, Scientists etc and so, if there is any doubt, information supplied may be discussed at a specialist multidisciplinary meeting to determine if we can help or not. Once a decision has been made we can feed this back to your GP and or contact you if we can take on your investigation.

Pathologists dealing with a sudden death who require advice or assistance can call our Clinical Coordinator (jackiec@adhb.govt.nz or 021825389); and if you wish to send information for review it can be emailed to our team support/administrator ().

Any clinician is welcome to phone or write for advice regarding their patients or families. It is almost always appropriate for the patient/family to be seen by a local specialist first.

Regarding written requests, please include as much detail about the family and the clinical presentation as possible, and attach any clinical test results (particularly ECGs) necessary to permit an informed response.

Fees and Charges Description

There is no charge for the service.

Hours

10:00 AM to 2:00 PM.

Mon – Fri 10:00 AM – 2:00 PM

Please note the office is not staffed all day everyday- we are a busy clinical team and therefore your options are to leave a message or email us: cidgadmin@adhb.govt.nz or jackiec@adhb.govt.nz 
We would prefer an email rather than your leaving a telephone voice mail message as emails can be quickly replied to.   When leaving a message, please let us have your full name and details and a brief note with regards to what the call relates to please.  Thankyou for making contact.

Languages Spoken

English

Common Conditions / Procedures / Treatments

Electrocardiogram (ECG)

An ECG is a recording of the heart's electrical activity. Electrode patches are attached to the skin to measure the electrical impulses given off by the heart. It is not painful and takes about ten minutes. The result is a trace that can be read by a doctor. It can give information about risk of heart rhythm disturbance - such as the length of the QT interval.

An ECG is a recording of the heart's electrical activity. Electrode patches are attached to the skin to measure the electrical impulses given off by the heart. It is not painful and takes about ten minutes. The result is a trace that can be read by a doctor.  It can give information about risk of heart rhythm disturbance - such as the length of the QT interval.
Exercise ECG or Exercise Test (ETT)

An ECG done when resting may be normal even when heart problems are present. During an exercise ECG the heart is made to work harder and signs of heart disease may be unmasked. This test involves walking on a treadmill while the heart is monitored. The treadmill gets faster with time but can be stopped at any time. This test is supervised and interpreted by a doctor. The test is helpful to detect many forms of inherited heart disease, especially long QT syndrome and CPVT (catecholaminergic polymorphic ventricular tachycardia). These conditions can sometimes cause sudden collapse and sudden death in young people, and are difficult to diagnose - the exercise test can help.

An ECG done when resting may be normal even when heart problems are present. 

During an exercise ECG the heart is made to work harder and signs of heart disease may be unmasked.  This test involves walking on a treadmill while the heart is monitored.  The treadmill gets faster with time but can be stopped at any time.  This test is supervised and interpreted by a doctor. 

The test is helpful to detect many forms of inherited heart disease, especially long QT syndrome and CPVT (catecholaminergic polymorphic ventricular tachycardia). These conditions can sometimes cause sudden collapse and sudden death in young people, and are difficult to diagnose - the exercise test can help.

Echocardiogram

Echocardiography is also referred to as cardiac ultrasound. This test is performed by a specially trained technician. It is a test that uses high frequency sound waves to generate pictures of the heart. During the test, the patient will generally lie on their back; gel is applied to their skin to increase the conductivity of the ultrasound waves. A technician then moves the small, plastic transducer over the chest. The test is painless and can take from 10 minutes to an hour. The machine then analyses the information and develops images of your child's heart. These images are seen on a monitor. This is referred to as an echocardiogram. Echocardiography can help in the diagnosis of many heart problems including hypertrophic cardiomyopathy or dilated cardiomyopathy.

Echocardiography is also referred to as cardiac ultrasound. This test is performed by a specially trained technician. It is a test that uses high frequency sound waves to generate pictures of the heart.  During the test, the patient will generally lie on their back; gel is applied to their skin to increase the conductivity of the ultrasound waves. A technician then moves the small, plastic transducer over the chest. The test is painless and can take from 10 minutes to an hour.
 
The machine then analyses the information and develops images of your child's heart. These images are seen on a monitor. This is referred to as an echocardiogram.
 
Echocardiography can help in the diagnosis of many heart problems including hypertrophic cardiomyopathy or dilated cardiomyopathy.
 
Cardiac Arrhythmias

The heart rate is controlled by a complex electrical system within the heart muscle which drives it to go faster when you exert yourself and slower when you rest. A number of conditions can affect the heart rate or rhythm. Heart rate simply refers to how fast the heart is beating. Heart rhythm refers to the electrical source that is driving the heart rate and whether or not it is regular or irregular. Some common terms Sinus rhythm is the normal rhythm Arrhythmia means abnormal rhythm Fibrillation means irregular rhythm or quivering of one part of the heart Bradycardia means slow heart rate Tachycardia means fast heart rate Paroxysmal means the arrhythmia comes and goes Tachycardia The most common of these in inherited heart disease is ventricular tachycardia. The usual presenting symptom is sudden collapse with loss of consciousness, particularly during or after exercise and also at night, when there may also be a seizure (fit). These can usually be prevented with regular medication such as a beta blocker. Sometimes a defibrillator pacemaker is needed. Bradycardia The most common form of this is called heart block. This is because messages from the electrical generator of the heart don't get through efficiently to the rest of the heart and hence it goes very slowly or can pause. Symptoms of the heart going too slowly include feeling tired, breathless or fainting. Tests Tests to diagnose what sort of arrhythmia is present include: an electrocardiogram (ECG). This trace of the heart's electrical activity gives the diagnosis of the source of the arrhythmia. This is often normal at rest and more extensive testing is needed to try and catch the arrhythmia especially if it is intermittent. an Ambulatory ECG. This can be performed with a Holter monitor which monitors the heart for rhythm abnormalities during normal activity for an uninterrupted 24-hour period. During the test, electrodes attached to the chest are connected to a portable recorder - about the size of a paperback book - that's attached to a belt or hung from a shoulder strap. Treatment Most treatments for tachycardias consist of medication to stop the abnormal rhythm or make it slower if and when it occurs. If bradycardia is diagnosed, a pacemaker may be fitted. This requires a small operation where a battery powered device is placed under the skin with wires that lead to the heart and provide it with electrical stimulation to prevent it from going too slowly.

The heart rate is controlled by a complex electrical system within the heart muscle which drives it to go faster when you exert yourself and slower when you rest.  A number of conditions can affect the heart rate or rhythm.  Heart rate simply refers to how fast the heart is beating.  Heart rhythm refers to the electrical source that is driving the heart rate and whether or not it is regular or irregular.

Some common terms
  • Sinus rhythm is the normal rhythm
  • Arrhythmia means abnormal rhythm
  • Fibrillation means irregular rhythm or quivering of one part of the heart
  • Bradycardia means slow heart rate
  • Tachycardia means fast heart rate
  • Paroxysmal means the arrhythmia comes and goes
Tachycardia
The most common of these in inherited heart disease is ventricular tachycardia.  The usual presenting symptom is sudden collapse with loss of consciousness, particularly during or after exercise and also at night, when there may also be a seizure (fit). These can usually be prevented with regular medication such as a beta blocker.  Sometimes a defibrillator pacemaker is needed.
  
Bradycardia
The most common form of this is called heart block.  This is because messages from the electrical generator of the heart don't get through efficiently to the rest of the heart and hence it goes very slowly or can pause.  Symptoms of the heart going too slowly include feeling tired, breathless or fainting.
 
Tests
Tests to diagnose what sort of arrhythmia is present include:
  • an electrocardiogram (ECG).  This trace of the heart's electrical activity gives the diagnosis of the source of the arrhythmia. This is often normal at rest and more extensive testing is needed to try and catch the arrhythmia especially if it is intermittent.
  • an Ambulatory ECG. This can be performed with a Holter monitor which monitors the heart for rhythm abnormalities during normal activity for an uninterrupted 24-hour period. During the test, electrodes attached to the chest are connected to a portable recorder - about the size of a paperback book - that's attached to a belt or hung from a shoulder strap.
 
Treatment
Most treatments for tachycardias consist of medication to stop the abnormal rhythm or make it slower if and when it occurs. 
If bradycardia is diagnosed, a pacemaker may be fitted. This requires a small operation where a battery powered device is placed under the skin with wires that lead to the heart and provide it with electrical stimulation to prevent it from going too slowly. 
Genetic Testing

In some forms of inherited heart diseases, genetic tests can be helpful when trying to identify which family members may be at risk of developing or carrying the condition. Testing for a range of cardiac inherited conditions is available, including Long QT syndrome (LQTS) and Hypertrophic Cardiomyopathy (HCM). Genetic testing involves a blood or saliva test, from which the lab extracts DNA. The lab looks at the genes linked to the condition suspected. The DNA from the first family member to be tested has to undergo a sequencing of the genes - in effect looking for spelling errors in a number of genes. The test is highly specialised and time consuming. In 2023 this can take up to 3 months. Once a genetic variant has been identified, in one or more genes, these can be looked for in the other family members. These tests can take between 6 weeks to 3 months. Each person having the test must be counselled carefully first, by a specialist or clinical geneticist or associate, and the patient must give their written informed consents. GPs and patients themselves may not order such tests, however GPs can refer their patients and families to the service for evaluation if there is a strong family history of cardiac inherited disease or young sudden deaths that appear to run in the family.

In some forms of inherited heart diseases, genetic tests can be helpful when trying to identify which family members may be at risk of developing or carrying the condition.

Testing for a range of cardiac inherited conditions is available, including Long QT syndrome (LQTS) and Hypertrophic Cardiomyopathy (HCM).

Genetic testing involves a blood or saliva test, from which the lab extracts DNA. The lab looks at the genes linked to the condition suspected. The DNA from the first family member to be tested has to undergo a sequencing of the genes - in effect looking for spelling errors in a number of genes. The test is highly specialised and time consuming. In 2023 this can take up to 3 months.

Once a genetic variant has been identified, in one or more genes,  these can be looked for in the other family members. These tests can take between 6 weeks to 3 months. 

Each person having the test must be counselled carefully first, by a specialist or clinical geneticist or associate, and the patient must give their written informed consents.

GPs and patients themselves may not order such tests, however GPs can refer their patients and families to the service for evaluation if there is a strong family history of cardiac inherited disease or young sudden deaths that appear to run in the family.

Contact Details

10:00 AM to 2:00 PM.

Jackie Crawford CIDG National Clinical Coordinator (Clinical Enquiries)

Louise Monson CIDG team support administrator (General Enquiries)

Cellphone: 021 825 389 (Clinical Coordinator)

Email: jackiec@adhb.govt.nz

Email Admin staff: cidgadmin@adhb.govt.nz 

Website www.cidg.org.nz
E referrals - Auckland Hospital  Cardiac Inherited Disease Service

2 Park Road
Grafton
Auckland 1023

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Street Address

2 Park Road
Grafton
Auckland 1023

Postal Address

Jackie Crawford
Cardiac Inherited Disease Coordinator
Cardiac Inherited Disease Registry N.Z.
Level 3 Cardiac Services Dept
Auckland Hospital
P.O. Box 92189
Auckland 1030
New Zealand

This page was last updated at 11:52AM on July 10, 2023. This information is reviewed and edited by Cardiac Inherited Diseases Service.