What’s the annual registry questionnaire, and why should you complete it?

Since 2019, more than 5,100 people living with type 1 diabetes (or LADA) — or having a child living with this condition — across Canada have joined the BETTER registry.

Developed as part of a collaborative research project involving researchers, patient partners, healthcare professionals, and decision-makers (such as INESSS), the registry aims to provide a clearer picture of the reality of type 1 diabetes in Canada. It collects information about the population, daily challenges faced by those living with type 1 diabetes, and the impact of treatments and technologies. In some cases, the registry data can also lead to changes in policy and insurance coverage.

Thanks to the collected information, several important aspects of living with type 1 diabetes have already been highlighted, including the burden of hypoglycemia, experienced stigma, and the impact of social inequalities on complications. Many other findings are yet to come.

Measuring changes over time

If you have already signed up, you will receive the annual questionnaire. This is sent to all participants aged 14 and older, regardless of the number of previously completed questionnaires.

While the initial questionnaires provide a snapshot at a given moment, the annual questionnaire allows us to track changes over time, for example:

• Use of new technologies or treatments

• Blood sugar management

• Quality of care

• Quality of life

Without these annual data, it would be impossible to show whether progress has been made.

This questionnaire covers various aspects of life with T1D and can take as little as 10 minutes to complete.

What would you do with $500?

Each time you complete the annual questionnaire, you enter a draw to win $500 (1 winner per 250 participants).

The invitation to complete the questionnaire is emailed one year after your registration and then annually thereafter. If you have any questions or suggestions, please don’t hesitate to contact us.