Type 1 Better

What is the BETTER project?

The BETTER research project directly involves the lived experience of people living with and affected by T1D. By working closely with patient partners, the BETTER team ensures that their perspectives and needs are integrated into all facets of their work related to T1D. This approach ensures that the project remains grounded in these lived experiences and enables efforts to be directed towards truly effective and relevant solutions to improve care and optimize the use of diabetes treatments and technologies.

The project has 2 main focuses:

• The BETTER registry: A Canadian registry of people living with T1D, (or LADA — Latent Autoimmune Diabetes in Adults) – or parents of children living with T1D. Through online questionnaires, participants can share their experience to enrich research and knowledge about T1D.
• The Support platform: An online self-training resource that provides educational materials and practical tools to support daily T1D management.

In addition to these main fields of activity, the project also undertakes clinical research and has a biobank (a collection of human biological samples and clinical data used for medical research), called CREATE-1, to further knowledge about T1D.

The registry currently has close to 5000 participants nationwide, providing valuable data to inform the scientific community and policymakers about the realities of T1D and its critical needs (e.g., the need for improved access to treatments and technologies). The data collected to date has allowed over 14 studies to be carried out to better understand the reality of T1D, exploring aspects such as the impact of socio-economic status, the burden of hypoglycemia, the use of technologies, and the stigma associated with this condition, to name but a few.

The Support platform has evolved over time to provide content, and a navigation experience tailored to adults and young people (aged 14 to 24) living with T1D, as well as to healthcare professionals. This platform, now recognized for its effectiveness in improving self-management among adults living with T1D and building the confidence of healthcare professionals, is a prime resource for education and training on T1D in Canada.

Moreover, the BETTER team has also succeeded in establishing provincial, national and international collaborations, thereby strengthening the project’s impact and scope in the field of T1D research and helping to train the next generation of researchers and healthcare professionals.

What’s next?

Priority objectives include expanding the number of participants and improving representativeness within the registry to better reflect the diversity of people affected by T1D in Canada. Future research will explore a wide range of aspects of living with T1D, and project members are committed to strengthening the promotion and transfer of knowledge to improve T1D care across the country. In addition, they aspire to make the Support e-learning platform a must-have reference for education and training on T1D.

The BETTER team is committed to continuing its efforts to improve life with T1D and encourages anyone interested in learning more or joining the registry to visit www.type1better.com.