In November, to celebrate World Diabetes Day, the BETTER (BEhaviors, Therapies, TEchnologies and hypoglycemic Risk in Type 1 diabetes) project announced that it is now the first registry of people living with type 1 diabetes in Canada.
A key focus of JDRF’s research strategy is to fund research that can improve the lives of people with T1D today, while cure-based research is conducted in parallel. Initially piloted in Quebec, this project is funded through the JDRF-CIHR Partnership to End Diabetes, as part of its clinical trials support by using new therapies and interactive technologies to reduce hypoglycemic risk.
The BETTER project brings together people who live with type 1 diabetes and parents of children with type 1 diabetes (patient-partners), researchers, health professionals and decision-makers who are already involved and who want to advance quality of life, research to improve the clinical practices, and treatments for people who live with type 1 diabetes.
To better address hypoglycemic anxiety and control, Dr. Rémi Rabasa-Lhoret and his team at Institut de Recherches Cliniques de Montréal (IRCM) developed a registry of people with T1D to identify the needs and realities related to the disease.
The BETTER project is focused on measuring and reducing hypoglycemia in people with T1D. Hypoglycemia is common and one of the greatest fears of people living with the disease. It is defined by low blood glucose with symptoms such as trembling, sweating, confusion, and dizziness. Hypoglycemia and fear of hypoglycemia are two main barriers to optimal T1D management and can have a profoundly negative impact on quality of life. In most children and adults living with type 1 diabetes, hypoglycemia is common and is the main barrier to adequate diabetes management.
The registry is now available to all Canadians. Joining the registry provides access to a support platform, currently available for adults 18 years and older living with T1D, and a separate platform for healthcare professionals. A new platform for teens is in development. The platform includes information on topics important to people with T1D including medication, blood glucose monitoring, nutrition, physical activity, hypo- and hyperglycemia (low and high blood glucose) and overall health.
The registry also includes updates and information on T1D research that can be accessed by participants.
As of November 2022, the registry included more than 2800 people with T1D. The BETTER project also researches innovative approaches for hypoglycemia treatment, for example, comparing the effect of intranasal versus injectable glucagon. Anyone living with type 1 diabetes, or whose child is living with type 1 diabetes, in Canada is invited to register and share their reality by visiting type1better.com