KD-CAAP – Information for Families

We’ve developed some information – leaflets and web pages, which we hope is helpful information for families and older children who are taking part in the trial.

We are actively recruiting within our trial at the moment – this is the stage when patients are invited to take part, and we will add to the information available for families as the trial progresses. Our KD-CAAP trial is due to run for 3 years and we plan to add things like regularly asked questions / answers which crop up at the start, to make sure families have as much information as we can provide. The findings from our trial will start to emerge from 2025 onwards.

Below are some links to information about Kawasaki Disease and the trial which you might find useful.

Family and Carers Guide to Kawasaki Disease

Newly published in 2022, this guide has been written by doctors, expert in Kawasaki Disease, together with families who have faced a Kawasaki Disease diagnosis themselves. It’s intended to be most helpful for families as they are discharged from hospital, but it packed with clearly written and easy to understand information that will be helpful to any family who has been affected by Kawasaki Disease.

TEMPERS leaflet (English)

This is an awareness leaflet, developed by Societi Foundation and  endorsed by the Royal College of Paediatrics and Child Health. Its helpful if you’re looking to raise awareness in your local community, at your child’s school, nursery or in health care settings too.

 

TEMPERS leaflet (Italian)

This is our awareness leaflet, as mentioned above – translated into Italian for Italian speaking families.

 

Long Term Issues Leaflet

Developed with the input of doctors expert in Kawasaki Disease, this leaflet describes some of the longer term issues which can affect some children who have had Kawasaki Disease. It’s especially useful for sharing with your child’s school and nursery, as they make their return back into their place of education – because it includes information to help teachers and staff understand what adjustments might be needed as your child recovers.

What is the KP-CAPP Trial?

This link takes you to the other pages on our website where more information about aspects of the KD-CAAP trial can be found.

 

Family Resource Portal

Packed FULL with information, shared experiences from other families, Q&A for many topics you might have questions about, interviews with doctors who are experts in Kawasaki Disease and much, much more – this is the go-to place for families who want to know more about Kawasaki Disease, and get doctor-backed information you can trust.

My Societi Youth Portal 

‘My Societi’ has been created by Societi, the UK Foundation for Kawasaki Disease. Designed by young people, for young people – to answer questions they may have,  as they grow up after Kawasaki Disease. It’s full of information designed to be accessible and engaging for pre-teens and teenagers from 12 – 18 years (but mums, dads and carers too!)

Got any questions?

If there are things you would like to know, please get in touch and we will find answers for you and the information you need, if we can, in discussion with the doctors leading the trial.