A kaleidoscope of possibilities
Have you heard of The Kaleidoscope Project? It’s a new study hosted by research partner Better Treatment 4 Kids Research Network (BT4Kids) that brings children and young people with chronic diseases, their families, and health-care workers together with researchers to identify the top 10 research topics.
A chronic disease in children is a condition that:
- Occurs between the ages of 0 to 18 years
- It is medically and scientifically diagnosed
- It is not yet curable
- It has been present for more than three months, or it has occurred at least three times during the past year and will probably reoccur.
The Kaleidoscope Project offers everyone an opportunity to have their say about research that’s important to them. It’s a project with lots of opportunity for interaction:
- We’re currently looking for people to complete our survey.
- We’re also recruiting participants for a one-day workshop on Saturday 15 October in Sydney. In discussion with participants, we’ll write up the list of the most important issues for research. Once the survey results are in, we’ll be in a good position to publish the Top 10.
- We’re aiming to develop a responsive research program, allocate resources better and ensure the health needs of patients and their families are prioritised.
The goal of our medical research is to improve health outcomes for patients. Life for a child with a chronic disease can be challenging and complicated. Chronically ill children and their families experience a range of issues including long-term health anxieties, education impacts, financial implications, and social concerns, and research programs should reflect this.
Get involved today. Please share this article with families dealing with chronic conditions in their children, such as arthritis or asthma or cystic fibrosis or chronic kidney disease or others you can think of. We’re after big impact, and more is definitely better!
Need more information?
Email Pamela Lopez-Vargas -The Kaleidoscope Project Research Officer
Call (02) 9845 1476