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How Useful Are Diabetes Registries?

The BETTER initiative is a research project on type 1 diabetes (T1D) being conducted in Quebec. It includes a number of studies about the risks and impacts associated with hypoglycemia (low blood sugar levels) for people with T1D. The BETTER registry, launched in April 2019, forms its base. 

A registry generally consists in a census that includes questionnaires on lifestyle and disease management. The BETTER registry includes general information (demographic data such as age and sex) as well as T1D-specific questions on topics such as:

  • hypoglycemia (e.g., frequency, severity, impacts); 
  • the use of new technology and treatments (e.g., continuous or flash glucose monitoring device, type of insulin);  
  • diabetes-related complications (e.g., eye and kidney damage). 

There are two registries of people with T1D in Canada, and only one in Quebec, the BETTER registry.

Pros and cons

A team of researchers has reviewed several national registries of people with diabetes across the world and has summarized their strengths and weaknesses.

They noted that registries offer interesting data on diagnosis, complications and treatment. Not only is this information useful for other studies on diabetes, but it also helps to understand what works and what doesn’t in the care provided.

The researchers also highlighted some areas with room for improvement, such as registries not gathering any data on important parameters, e.g., glycated hemoglobin (HbA1c). Also, the actual impact of registries on treatment protocols is not always clearly defined or identified, and some registries don’t distinguish between the different types of diabetes. 

In general, registries do help to significantly improve healthcare delivery and diabetes management, in particular by providing data to assess the impact of new treatments and technology in real-life situations.  

What about the BETTER registry?

The BETTER registry comprises three confidential questionnaires developed by a team of researchers specialized in T1D and patient partners with T1D. The questionnaires gather information on the patients’ lifestyle, treatment and T1D management. 

Confidential registries that include data reported directly by participants provide more information than traditional clinical studies. Some participants are more willing to share private information (e.g., regarding drug use or stigmatization) with a confidential registry than with their healthcare team. Also, participants usually have a broader vision than healthcare professionals, which is extremely useful for research purposes. However, some data may be less accurate (e.g., medication doses or HbA1c). That’s why the BETTER registry includes both the patients’ input and standardized data.  

A good example of potentially biased data provided by patients is the detection of hypoglycemia, which varies depending on whether the patient uses a continuous glucose monitoring device or not. With no alarms going off when blood sugar levels are too low, patients who use capillary blood sugar meters are more likely to miss some hypoglycemic episodes, for instance at night or when they have hypoglycemia unawareness. The BETTER team has observed that registry participants who use a continuous glucose monitoring device report a higher number of hypoglycemic episodes than participants who use a capillary blood sugar meter. 

These past months, we have shared some data from the BETTER registry with the Institut national d’excellence en santé et services sociaux (INESSS), the organization that makes recommendations to the Régie de l’assurance maladie du Québec (RAMQ). One of our goals was to show how technology positively impacts the lives of people with T1D and the healthcare system. For example, we know that BETTER registry participants who use a continuous or flash glucose monitoring device say this technology helps them immensely in managing their blood sugar levels.

Are you signed up for the BETTER registry yet?

IF YOU’RE LIVING WITH TYPE 1 DIABETES IN QUEBEC, YOU CAN SIGN UP FOR THE REGISTRY. YOU CAN PARTICIPATE ACCORDING TO YOUR AVAILABILITY, AND YOU MAY ONLY NEED 10–15 MINUTES.

THE WHOLE BETTER TEAM IS GRATEFUL TO ALL THE PARTICIPANTS WHO HAVE CONTRIBUTED TO THE REGISTRY. THANK YOU ALL SO MUCH!

To learn more and sign up, please go to www.type1better.com

Reference

Bak, J.C.G., Serné, E.H., Kramer, M.H.H. et al. National diabetes registries: do they make a difference?. Acta Diabetol 58, 267–278 (2021). https://doi.org/10.1007/s00592-020-01576-8

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