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Physician Information

Introduction:
This page contains information and resources aimed at physicians and counsellors dealing with people with inherited cardiac disease within NZ, and considering obtaining cardiac genetic testsing and enrolling their patient or family into the National Registry. Referral and reporting forms are under "FORMS" in the main menu. Remember to send all clinical details, referral and consent forms to the coordinator (NOT THE LAB!). Only a standard blood form (labelled as CIDG test) and EDTA samples go to Lab Plus.

What is the Cardiac Inherited Disease (CIDG) registry?

This is a national, ethically approved, clinical registry of individuals and families in New Zealand with an inherited Heart Disease. Information about individuals is stored with their consent, or with the consent of their parent or guardian. Deceased individuals can be registered with consent of the next of kin. It is primarily a clinical tool to help coordinate the effective screening of families for members at risk. The Registry also registers victims of sudden unexplained death, or arrhythmic syncope, where an inherited heart disease is a possible explanation. The clinical coordinator is Jackie Crawford (jackiec@adhb.govt.nz) under the clinical supervision of Drs Jon Skinner, Warren Smith and Ian Hayes.

Enrolling a patient in the Cardiac Inherited Disease registry:

Physicians and Geneticists affiliated with CIDGNZ may enrol patients in the registry. Formal consent from the patient or guardian is required (see below).

Genetic testing:

What can we test for?

Molecular genetic testing, coordinated by CIDG, is available for Long QT syndrome, Brugada syndrome, Progressive Cardiac conduction disease (PCCD) and Hypertrophic cardiomyopathy (HCM). The testing laboratory may change from time to time according to levels of service and fees. All samples are processed through Lab Plus in Auckland.

On a research basis, testing may be available for CPVT (Catecholaminergic Polymorphic Ventricular Tachycardia) and ARVC (Arrhythmogenic right ventricular cardiomyopathy). Contact the coordinator or lead clinician (below) first in these cases.

For advice from a CIDG cardiologist – regarding Long QT syndrome, Brugada, CPVT and PCCD, contact Dr Jon Skinner at Auckland City Hospital Auckland, or in the Waikato region, Dr Martin Stiles at Waikato Hospital. Contact Warren Smith regarding ARVC and HCM based in Auckland district health board (09) 367 0000.

How is Molecular genetic testing arranged?

Testing can only be arranged by CIDG approved clinicians. Most are cardiologists, clinical geneticists or paediatricians. Testing may not be ordered by family practitioners, nursing staff or junior medical staff.

There are four stages to the process:

1. The subject or parent/guardian or next of kin for a deceased individual reads the information sheet about the registry, then signs permission to join CIDG for the storage of clinical information (Clinical consent form, sent to CIDG coordinator).

2. Consent is then obtained for the genetic test (blood test / blood storage form). This includes the option of long term DNA storage, and consent for the use of research facilitites to obtain a diagnosis if needed. (sent to CIDG coordinator)

3. Referral information (form 1A) and ECGS are also sent to the coordinator along with the above forms.

4. Blood is extracted and sent to lab Plus in Auckland (NOT the coordinator), using a standard lab request form stating " CIDG molecular testing please contact coordinator"

Each person signing up for the test has to have read the general information about CIDG, and the specific condition (eg LQTS, HCM, sudden death of a relative) information sheets.

The forms are listed below, for queries please contact jackiec@adhb.govt.nz.

Process check list (print this out to check you've done all you need to!):

a. Referral form filled (Form 1A)

b. General CIDG registry information sheet (all patients need to have read this)

c. Condition specific information sheets (all patients need one of these):

          Long QT



          HCM

          ARVC

          CPVT

          DCM

          Brugada

          Sudden Death (the decendant is registered with the registry, with next of kin consent)

d. Clinical Consent form is signed (the patient consents to join the registry)

e. Genetic test/DNA storage consent form signed (the patient consents to the genetic test.) (Patients who already have a genetic diagnosis and don't need further testing will not need this one)

f. Send both of the consent forms and form 1A along with representative ECG and a clincial summary letter to the coordinator. DO NOT GIVE THEM TO THE PATIENT OR SEND THEM TO THE LAB.

g. For live participants give the patient a standard blood form requesting 4 x EDTA samples to be sent to Lab Plus in Auckland with instructions "CIDG molecular genetic testing". DO NOT SEND THE SAMPLE TO THE COORDINATOR.

Information sheet for next of kin who wish to register a deceased relative with CIDG

ALL FORMS AND INFORMATION SHEETS ARE AVAILABLE UNDER "FORMS" FORM THE MAIN MENU ON THIS SITE.

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Physician Information

FOR INFORMATION PLEASE CONTACT JACKIE CRAWFORD jackiec@adhb.govt.nz or team support administrator Anoma or Louise Schweder (CIDGadmin@adhb.govt.nz)

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