As part of the study, Lynne’s sons were given two medications that may have the potential to slow progression of kidney disease. Results suggest that one of the drugs, called an ACE inhibitor, has a small beneficial effect at limiting progression of microalbuminuria, a condition where some excess nutrients leak from the kidneys. Microalbuminuria is an early sign of kidney disease.
But studying the effects of preventative drugs is just one component of AdDIT. With so many teenagers enrolled – more than 350 – the study is a prime opportunity to explore what factors may contribute to diabetes-associated complications during this important stage of life. Therefore, the researchers are also looking at a number of other factors throughout the course of the study. This includes taking urine and blood samples on a regular basis, which may reveal proteins and other indicators (called biomarkers) associated with kidney disease.
Dr. Farid Mahmud, a researcher at Sick Kids Hospital in Toronto who is helping lead the study, also notes that teenagers face a number of psychological stresses during this time in their life, as they become young adults. “We’ve found in the past that these [stressors] are significant contributors to some of the risks that these patients face in terms of progression of their diabetes complications,” he says. For these reasons, the study is also monitoring psychosocial factors in order to better understand how these may contribute to the long-term physical health of teenagers with diabetes.
For the McArthur family, the teenage members are not the only ones involved in AdDIT. Lynne has been playing a central role in the trial herself. As a patient partner, she provides the research team with valuable feedback on how to reach out to other parents of diabetic children and how to communicate technical aspects of the study to them, among other tasks to support the research project.
“Over the years, I developed a great appreciation for the work that Dr. Mahmud and his team do, and a have tremendous respect for what they’re trying to accomplish,” she says. “I feel privileged to be part of the team, accelerating important research to help our kids with Type 1 diabetes.”
Lynne says working as a patient partner on the research team has been a very positive experience. “Adding the patient voice does two things,” she explains. “It humanizes the research, which is very important. And it brings a great voice to the table that hasn’t been heard in the past.”
Although her two boys are in the process of transitioning out of their pediatric program for managing diabetes, the family will continue to contribute to and participate in the AdDIT study in the coming years, in the hopes of advancing therapies, preventative measures, and care for others living with diabetes.