What does the BETTER registry do?

Nearly 5,000 Canadians have signed up to the BETTER registry, the first registry of people with type 1 diabetes (T1D) and parents of children who live with T1D. We thank you so much for taking part in this research initiative launched in 2019. Sharing your experience living with T1D helps our researchers to better understand the realities of this autoimmune disease, to advance knowledge and care, to identify certain needs associated with the management of T1D and to advocate for better access to technologies and treatments. 

The insights you provide and update once a year in the registry questionnaire give scientists a wealth of information that would otherwise be difficult for them to obtain: number of hypoglycemia episodes in recent months, quality of sleep, level of physical activity, impact of T1D on mental health, use of technologies, etc. You are valuable members of the T1D research community. 

But, what do we actually do with this information? How do we protect your data? What have we learned thanks to you? Let’s take a look at the inner workings of the BETTER registry.

First, there’s the consent form

Participating in a research project always requires reading and signing a consent form. The Government of Canada advises that “for research with humans to be considered ethical, it is essential that participants provide their free, informed and ongoing consent. Research can begin only after the participants have provided their initial consent, and individuals must have the possibility to withdraw their consent at any point during the research project.” 

Before completing the T1D questionnaire, you must read the consent form, which explains the purpose of our research, its procedures, advantages, risks and disadvantages, if any. It also explains how the BETTER team stores and protects your data.  

Highly confidential information

Personal information such as your name, home address, date of birth and email address are stored in a separate database from that containing T1D-related data. This way, scientists who use the BETTER registry don’t have access to any personally identifiable information. 

The registry data is only accessible to researchers in charge of the research project. Any other scientist or partner wishing to have access to the data must submit a written request, which must be approved by a research ethics committee. Under no circumstances will personally identifiable information be shared.

Supporting science, advocating for your rights

What you share of your experience living with T1D is essential to advance knowledge and get a better understanding of the impact of this autoimmune disease, its treatments and its challenges. Registry data can also support advocacy for better access to technologies such as continuous glucose monitors and insulin pumps. However, under no circumstances are they used for marketing purposes.

Some findings from the BETTER registry

Since 2019, we have been conducting a number of studies using data from the registry. Here are just a few examples of what we’ve learned from your responses to our various questionnaires. You can also visit Our publications and other blogs to learn more.