Since 2019, people with type 1 diabetes (T1D) and parents of children with T1D in Quebec can sign up for the BETTER registry.
The registry is a research project led by researchers, patient partners, healthcare professionals and decision makers (e.g., INESSS) to provide a better voice for type 1 diabetes in Quebec (e.g., population, issues related to living with T1D, the impact of certain treatments and technologies). In some cases, the registry data can also lead to changes in policy and insurance coverage.
The data collected so far has already shed some light on some aspects of life with T1D (e.g., the burden associated with hypoglycemia, stigma, 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 might receive the annual questionnaire, which is sent to registrants aged 14 years old and over who completed at least two questionnaires upon sign-up.
While the information you provide when you sign up and complete the initial questionnaires is used to paint a picture of the situation at a given time, the information entered in the annual questionnaire is used to measure changes over time (e.g., use of new technologies or new treatments).
The answers in the questionnaires are the only way to tell and demonstrate whether any of the following aspects have improved:
- blood sugar control;
- quality of life;
- and others.
The questionnaire covers a wide range of aspects, so it can take up to 45 to 60 minutes to fill it out. We’re aware that it may seem long, and we’re currently working on shortening it and/or changing its format (e.g., breaking it up into shorter questionnaires on specific aspects that are sent to a certain number of registrants only).
What would you do with $500?
Every time you complete an annual questionnaire, you have a 1 in 250 chance to win $500.
Currently, the invitation to complete the annual questionnaire is sent one year after you have signed up, and then once every year.
If you have any questions or suggestions, please don’t hesitate to contact us.