This week is being used to celebrate the hard work of both researchers and the kids and families taking part in clinical trials that are happening at the Children’s Hospital Research Institute of Manitoba.
Christabel Agyei-Gyamfi was diagnosed with chronic kidney disease in 2019 and last summer she got a transplant.
While she was a patient, she participated in research and made sure to include her feelings about not letting the disease get in the way of her life plans.
“I told myself that you have a condition. You can learn how to adapt to it and it shouldn’t stop you from achieving your dreams and being a wonderful person,” he said in an interview with CTV News.
The 19-year-old now sits on a patient advisory committee, helping steer research at the Children’s Hospital Research Institute of Manitoba.
Right now, there are about 45 studies running out of the institute, four of which are operating nationally.
“So we have really become not only somebody who participates in clinical trials, but we’re also a unit that leads clinical trials,” said Dr. Terry Klassen, the CEO of the institute.
Klassen said the most recent example of pediatric trials with a powerful impact is the ones that were done on COVID-19 vaccines.
“But we have many other examples in terms of improving how we care for children because if we just keep doing things the same way, things will not improve. And clinical trials are the way to make things better for tomorrow.”
A recently funded program called ‘Impact’ is also looking to share knowledge with future generations of clinical researchers on how to design, conduct and follow forward studies.
“I’m someone who had to learn about clinical trials by making a lot of mistakes and I didn’t have a training program because there wasn’t one that existed. So a lot of banging my head against the wall and I wasn’t t doing things the right way,” said Lauren Kelly, who is a scientist at the institute.
A part of that is listening to the experiences of the kids and families who participate in research. Like 24-year-old Jennifer Lopez, who has been a part of the type 2 diabetes study since she was diagnosed 12 years ago.
“The surveys that I’ve done and that I’ve completed in the last few years, they were missing certain links in terms of mental health and now we’re moving towards that direction of including those more, which is very beneficial,” said Lopez.
This Saturday, May 20, marks international Clinical Trials Day, which was started to commemorate the day that James Lind began the first randomized clinical trial in 1747.
He was a Scottish physician and his trial helped discover that citrus fruits cured scurvy.
