Connect1d Canada Aims to Connect T1D Researchers with Interested Study Participants
January 7, 2022
By Krista Lamb
One of the ongoing challenges of running clinical trials in the area of type 1 diabetes (T1D) is finding a diverse pool of participants. That was the motivation behind the development of Connect1d Canada, an online platform aimed at bringing the two communities together to accelerate the pace of research.
Funded by JDRF Canada and CIHR funding for Diabetes Action Canada, the platform launched in 2021 with BBDC member Dr. Joe Cafazzo from the Centre for Global eHealth Innovation at UHN leading the project. He is joined by scientific co-leads Dr. Bruce Perkins from the Leadership Sinai Centre for Diabetes and Dr. Peter Senior from the Alberta Diabetes Institute.
The entire Connect1d Canada platform was designed in collaboration with the T1D community, ensuring it meets the needs of those living with the condition. Kate Farnsworth, the parent of a child with type 1 diabetes, is a co-lead on the project and governance is provided by a committee of people living with or caring for someone with T1D.
For researchers, the project fills a long-established need. Finding diverse study participants is challenging and often holds up projects that could have real impact on the health of those living with T1D. Similarly, it is often only those who receive treatment in a research centre who learn about and engage with studies. This creates a homogenous pool of candidates and leaves out a wide range of people across Canada who may potentially be interested in participating but aren’t aware of the opportunities. Connect1d Canada hopes to change this by creating a secure, engaged registry where those with T1D and researchers can connect easily.
“Our hope with Connect1d Canada is that the reach of the platform would allow for more inclusion of those who are not often, or ever, asked to participate in type 1 diabetes research. Canada’s vast geography should no longer be a barrier to engaging with researchers and others living with diabetes,” says Cafazzo. “What we’ve heard loud and clear from the T1D community is that the experience needs to be frictionless, respect their time, and appeal to their values. Going forward, we look forward to having the community lead the technology roadmap of Connect1d Canada, rather than just have input.”
In addition to learning about studies they may be eligible for across Canada—allowing them to choose to apply for those that would be of interest—the site is also providing important feedback to the community, including lay summaries of research projects. This “closing of the loop” is something the type 1 diabetes community and those involved in the development of the platform felt was very important. Many had participated in studies before and had not received any updates about the outcomes. This left them unsure of the value of their participation and less likely to become involved in future studies. With Connect1d Canada, each researcher who recruits through the registry is expected to provide updates to continue the flow of information.
For co-scientific lead, Dr. Bruce Perkins, who himself lives with T1D, the project is filling a need within the community. “I have been so amazed with how committed people with T1D are to contributing to research. It is very exciting to me that those living with diabetes helped us to develop Connect1d Canada from the outset. And from those ideas came this registry that connects researchers who need to efficiently recruit for research studies to answer important questions with the volunteers who are completely invested in those same questions. So simple yet so important!
Researchers who are recruiting for T1D studies in Canada and those living with T1D are encouraged to visit the website and register: connect1d.ca