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CoRDS Registry

Kawasaki Disease Foundation Australia has partnered with Sanford Coordination of Rare Diseases (CoRDS) Registry.

This is an international and Central registry of individuals of any age who have been diagnosed with a rare disease. It was primarily developed to meet an unmet need for patient registries worldwide.

If you or a family member has been diagnosed with KD, you can help researchers see the whole picture.

To enrol in the CoRDS registry, or for more information, visit www.sanfordresearch.org/cords


Resources

We often hear from parents that there is so little reliable information on KD. The Internet is the first point of call for most of us but there is so much conflicting information it is difficult to cope with the lack of information given at the time of diagnosis.

Dr. Burgner, our Medical Advisor has told us one of the best ways is to search for 'Kawasaki Disease' on PubMed, which is a medical literature search engine. The following link should lead you to an up-to-date search for KD papers.

Kawasaki Disease - The Importance of prompt recognition and early referral has just been published by Dr. Burgner and Michael Cheung. Michael is currently Director of Cardiology at the Royal Children's Hospital Melbourne.

 

The following resources are ones we can recommend -

R.C.H Parent Information Sheet.pdf
KD (Aust) Parent Survival Guide
Article by Jane Newburger Sourced cira.ahajournals.org
Whitehorse Division of General Practice Newsletter - (Talking Shop) November 2007
KD Genetics Article - Jan 2009 Dr. Burgner and others

Hospitalisation with Infection, Asthma, and Allergy in Kawasaki Disease Patients and Their Families - published November 2011 by Dr. Burgner and Associates

KD paper published August 2013 is freely available for download

 

The following videos by the U.S KD Foundation placed on Youtube are also very informative -

Animated Heart Video
Reflections

KD Video - A Parents Guide

KD Foundation - Join the Quest

 

The following videos were taken at the KD symposium in San Diego in November 2009. Dr. Kawasaki was a guest.
KD Videos

 

Intraverous Immunoglobulin (IVIG) (sourced from the U.S. KD Foundation)

Why can't my child receive the MMR (Measles) and Varicella (Chicken Pox) vaccine after being treated for KD with IVIG? This is a common question parents often ask, and the answer is that IVIG may affect the effectiveness of certain vaccines, which is the reason why doctors recommend for them to be delayed for a few months post being treated with an IVIG.

The link below explains in detail how IVIG works. Click Here

 

If KD is suspected a child may need to have the following tests:

ECG

An ECG is a recording of the heart rhythm that involves placing ECG electrodes (stickers) on the arms, legs and across the chest. A recording is then made showing the electrical activity of the heart. It requires being as still as possible when the recording is taken. It is useful if parents of babies or small children bring something to help achieve this eg: a bottle or toys. The test should take 3-5 minutes.

ECHOCARDIOGRAM

An echocardiogram is an ultrasound of the heart to look at the structure size and blood flow of the chambers and associated blood vessels. Your child needs to be settled during the study so it is helpful with babies and infants to have a bottle or dummy available for them. Maybe a favourite toy would be useful for small children. For older children DVDs are available or you could bring a particular favourite. The study normally takes about 30-40 minutes, but this may vary.

After the initial echo follow up echos are usually scheduled at 2 weeks, 6 weeks and often 6 months.