The Cardiac Inherited Disease Registry
This is a national, ethically approved, clinical registry of individuals and families in New Zealand with an inherited heart disease. It is primarily a clinical tool to help co-ordinate effective screening for families with members at risk. Information about individuals is stored with their consent, or with the consent of their parent or guardian. If the individual is deceased, they can be registered with the consent of their next of kin.
The Registry also registers victims of sudden unexplained death, unexplained resuscitated sudden death or arrhythmic syncope, where an inherited heart disease is a possible explanation.
The following is a list of the inherited heart conditions we cover, and which should be registered when the patient consents:
- Sudden death
- Unexplained resuscitated sudden cardiac death
- Arrhythmic syncope
For other rare genetic conditions that are not covered by CIDG please see http://www.nzord.org.nz/
Here are some other resources you might find useful when working with patients with cardiac inherited diseases:
Heart Rhythm New Zealand Council
The Cardiac Inherited Disease Group (CIDG) is proudly affiliated with Heart Rhythm New Zealand (HRNZ) which is an integral part of the Cardiac Society of Australia and New Zealand (CSANZ). HRNZ and CIDG provide advice on a range of professional issues as well as contributing to the facilitation of national and international best practice guidelines.
Please see HRNZ Online
Enrolling a patient in the Cardiac Inherited Disease Registry
Health professionals may enrol patients in the cardiac inherited disease registry. Formal consent from the patient or guardian is required and can be found below. Your local CIDG coordinator can help you with this. Contact us or register now.
What can we test for?
CIDG currently co-ordinates molecular genetic testing, correlating them with clinical findings for the following conditions:
- Long QT syndrome
- Brugada syndrome
- Sudden Unexplained Death/unexplained cardiac arrest
- Progressive cardiac conduction disease (PCCD)
- Hypertrophic cardiomyopathy (HCM)
- DCM (Dilated Cardiomyopathy)
- ARVC (Arrythmogenic Right Ventricular cardiomyopathy)
However with the advancement of genetics we may be able to offer different genetic testing in the future such as whole exome sequencing. It may be worthwhile to discuss long term storage of DNA with your patient.
Genetic results are reviewed by a national multidisciplinary team and correlated with the clinical findings and family history prior to release. This same team is happy to give advice prior to testing. Genetic variants of uncertain significance may require phenotype –genotype co-segregation studies, which are coordinated through the national registry
For advice from a CIDG cardiologist please contact your local coordinator who will put you in touch with a specialist.
How can genetic testing be arranged?
Patients having genetic testing must have adequate genetic counselling prior to testing and therefore genetic testing should be arranged by a CIDG specialist who is able to arrange this. Each person signing having genetic testing must be consented to join the CIDG registry up for the test must have read the general information about CIDG, and the information sheet on their specific condition.
For more information, please contact us.
Make a Referral
If you would like to refer your patient, your family member or yourself to the Cardiac Inherited Disease Registry, please contact your Regional Co-ordinator.
Heath Professionals may write to us with patient details, background and relevant family history.
Please include details of any diagnostic tests performed and good quality copies of ECGs if possible.
We look forward to hearing from you.