The Canadian Alliance of Pediatric Rheumatology Investigators (CAPRI) is a research network made up of pediatric rheumatologists and other researchers.  Past, present, and future research will lead to discovering new information about rheumatic conditions including long-term outcomes, medication side effects, ways to improve quality of life, and the underlying cause and best treatments of rheumatic disease.

We know that in many cases valuable information gained from research studies does not quickly or easily change medical care. Knowledge Translation (often called “KT”) is a science that looks at how to help move research knowledge into the hands of health care providers, patients, and their families so that care will get better.

A group of researchers from across Canada did a study to understand the barriers that make it harder for this new research information about JIA to reach key people. They also determined what can be helpful.  Many key people were interviewed including parents of children with JIA, adolescents with JIA, pediatric rheumatologists, and allied health professionals like nurses and physiotherapists.

What were the key findings from the study from the point of view of parents? 

• Parents expect that information from research should be communicated to them by their child’s pediatric rheumatologist as part of clinical care.
• It is helpful to have information in a variety of formats including written, video, and online.
• The timing of information delivery is an important factor (most important at diagnosis and disease flares).
• Many parents did not know much about pediatric rheumatology research in Canada highlighting the need to do a better job at Knowledge Translation.

What are the next steps?

The Cassie + Friends newsletter is just one method that helps to provide new information from research to the pediatric rheumatology community.  We would like to create more KT “tools” to help move knowledge into clinical care quickly and effectively. We will need help from a variety of people including caregivers and children and youth with JIA.  Stay tuned!!

For further information, we recommend reading Parental Perspectives about Research and Knowledge Translation in Juvenile Idiopathic Arthritis.