Registry of Patients Living With Type 1 Diabetes

The objective of phase 1 is to draw an overall picture of the population with type 1 diabetes in Canada in terms of demographics, diabetes treatment, hypoglycemia frequency and diabetes complications. It takes about 10 minutes to answer the questionnaire. If the participant uses a continuous glucose monitor and agrees, the participant is invited to send the latest report of the continuous glucose monitor.

The objective of phase 2 is to characterize the causes, experience and consequences of hypoglycemia. Phase 2 also involves, if the participant accepts and live in the province of Quebec or Alberta, to provide the research team with their latest blood and urine tests as well as their list of medications.

The objective of phase 3 is to collect information on diabetes and hypoglycemia treatment, hyperglycemia management, sleep habits, depression, physical activity and the benefits of technologies to reduce the frequency of hypoglycemia. Phase 3 also involves, if the participant agrees, answering a food questionnaire, wearing a step counter, measuring waist circumference

• Online questionnaire - Phase 1 (Other): Draw an overall picture of the population with type 1 diabetes in Canada in terms of demographics, diabetes treatment, hypoglycemia frequency and diabetes complications.
• Online questionnaire - Phase 2 (Other): Characterize the causes, experience and consequences of hypoglycemia.
• Online questionnaire - Phase 3 (Other): Collect information on diabetes and hypoglycemia treatment, hyperglycemia management, sleep habits, depression, physical activity and the benefits of technologies to reduce the frequency of hypoglycemia.
• Food questionnaire (Other): 24-hour food recall questionnaire
• Pedometer (Other): Participants will wear a podometer for 14 consecutives days
• Waist circumference (Other): Participants will be asked to measure their waist circumference
• Blood and urine tests (Other): Participants will be invited to send us their latests blood and urine test results.
• List of medications (Other): Participants will be invited to send us their list of medications
• Continuous glucose monitor (Other): Participants will be invited to send us the latest report of their continuous glucose monitor

Primary outcomes

• Number of non-severe hypoglycemic episodes [12 months]: Participants will be asked to report the number of non-severe hypoglycemic episodes in the last 12 months in a questionnaire designed by the investigators. The definition of non-severe hypoglycemia is a blood sugar below 3.0 mmol/L that the participant was able to treat himself

Secondary outcomes

• Number of severe hypoglycemic episodes [12 months]: Participants will be asked to report the number of severe hypoglycemic episodes in the last 12 months in a questionnaire designed by the investigators. The definition of severe hypoglycemia is low blood sugar levels requiring help from another person or use of glucagon or hospitalization or loss of consciousness.
• Fear of hypoglycemia [6 months]: Fear of hypoglycemia will be assessed by the Hypoglycemia Fear Survey II.
• Diabetes distress [1 month]: Diabetes distress will be assessed by the Diabetes Distress Scale.
• Medical follow-up for diabetes [12 months]: Participants will be asked to report in a questionnaire designed by the investigators how many times in the last 12 months they have seen a health care professionals (family doctor, medical specialist, nurse, nutritionnist, kinesiologist, psychologist, pharmacist, social worker).
• Insulin doses [3 days]: Participants will be asked to report in a questionnaire designed by the investigators their insulin doses of the last 3 days (basal insulin and insulin given at mealtime).
• Physical activity [1 week]: Physical activity will be assessed by the International Physical Activity Questionnaire.
• Sleep habits [1 month]: Sleep habits will be assessed by the Pittsburgh Sleep Quality Index
• Depression [2 weeks]: Depression will be assessed by the Patient Health Questionnaire (PHQ-9)
• Number of steps [14 days]: The number of steps will be measured by a pedometer

Sex: All

Inclusion Criteria:

* Diagnosis of type 1 diabetes
* Living in Canada

Exclusion Criteria:

* Type 2 diabetes
* Gestational diabetes

• Results publication: Housni A, Katz A, Kichler JC, Nakhla M, Secours L, Brazeau AS. Predictors of stigma perception by people with type 1 diabetes: A cross-sectional analysis of the BETTER registry. Diabetes Metab Syndr. 2024 Aug;18(8):103112. doi: 10.1016/j.dsx.2024.103112. Epub 2024 Aug 29. PMID 39236506
• Results publication: Lalanne-Mistrih ML, Bonhoure A, Messier V, Boudreau V, Lebbar M, Talbo MK, Sun CJ, Bandini A, Secours L, Calderon V, Grou C, Tressieres B, Brazeau AS, Rabasa-Lhoret R. Overweight and Obesity in People Living With Type 1 Diabetes: A Cross-Sectional Analysis of the BETTER Registry. Diabetes Metab Res Rev. 2024 Sep;40(6):e3837. doi: 10.1002/dmrr.3837. PMID 39193662
• Results publication: Madar H, Lalanne-Mistrih ML, Lebbar M, Wu Z, Robitaille Y, Pelletier J, Grou C, Brazeau AS, Rabasa-Lhoret R. Cardiovascular Risk Factors and Adherence to Cardiovascular Protection Practice Guidelines in Adults With Type 1 Diabetes: A BETTER Registry Cross-sectional Analysis. Can J Diabetes. 2023 Aug;47(6):473-481.e1. doi: 10.1016/j.jcjd.2023.04.006. Epub 2023 Apr 12. PMID 37059389
• Results publication: Wu Z, Talbo M, Lebbar M, Messier V, Courchesne A, Brazeau AS, Rabasa-Lhoret R. Characteristics associated with having a hemoglobin A1c </= 7 % (</=53 mmol/mol) among adults with type 1 diabetes using an automated insulin delivery system. Diabetes Res Clin Pract. 2023 Dec;206:111006. doi: 10.1016/j.diabres.2023.111006. Epub 2023 Nov 10. PMID 37952601
• Results publication: Talbo MK, Lebbar M, Wu Z, Vanasse A, Lalanne-Mistrih ML, Brazeau AS, Rabasa-Lhoret R. Gender differences in reported frequency and consequences of hypoglycemia among adults living with type 1 diabetes: Results from the BETTER registry. Diabetes Res Clin Pract. 2023 Aug;202:110822. doi: 10.1016/j.diabres.2023.110822. Epub 2023 Jul 7. PMID 37423499
• Results publication: Wu Z, Rabasa-Lhoret R, Messier V, Shohoudi A, Dasgupta K, Pelletier J, Brazeau AS. Self-reported haemoglobin A1c highly agrees with laboratory-measured haemoglobin A1c among adults living with type 1 diabetes: A BETTER registry study. Diabetes Metab. 2022 Jan;48(1):101277. doi: 10.1016/j.diabet.2021.101277. Epub 2021 Sep 9. No abstract available. PMID 34509633
• Results publication: Nguyen E, Wong K, Lalanne-Mistrih ML, Rabasa-Lhoret R, Brazeau AS. Association between low-carbohydrate-diet score, glycemia and cardiovascular risk factors in adults with type 1 diabetes. Nutr Metab Cardiovasc Dis. 2024 Sep;34(9):2143-2154. doi: 10.1016/j.numecd.2024.04.014. Epub 2024 Apr 27. PMID 38866607
• Results publication: Talbo MK, Katz A, Dostie M, Legault L, Brazeau AS. Associations Between Socioeconomic Status and Patient Experience With Type 1 Diabetes Management and Complications: Cross-sectional Analysis of a Cohort From Quebec, Canada. Can J Diabetes. 2022 Aug;46(6):569-577. doi: 10.1016/j.jcjd.2022.02.008. Epub 2022 Mar 3. PMID 35864032
• Results publication: Talbo MK, Rabasa-Lhoret R, Yale JF, Peters TM, Brazeau AS. Are nocturnal hypoglycemia prevention strategies influenced by diabetes technology usage? A BETTER registry analysis. Diabetes Res Clin Pract. 2022 Sep;191:110080. doi: 10.1016/j.diabres.2022.110080. Epub 2022 Sep 12. PMID 36099973
• Results publication: Prevost MS, Rabasa-Lhoret R, Talbo MK, Yardley JE, Curry EG, Brazeau AS. Gender Differences in Strategies to Prevent Physical Activity-Related Hypoglycemia in Patients With Type 1 Diabetes: A BETTER Study. Diabetes Care. 2022 Mar 1;45(3):e51-e53. doi: 10.2337/dc21-1899. No abstract available. PMID 35045175
• Results publication: Madar H, Wu Z, Bandini A, Perkins B, Messier V, Pomey MP, Brazeau AS, Rabasa-Lhoret R. Influence of severe hypoglycemia definition wording on reported prevalence in adults and adolescents with type 1 diabetes: a cross-sectional analysis from the BETTER patient-engagement registry analysis. Acta Diabetol. 2023 Jan;60(1):93-100. doi: 10.1007/s00592-022-01987-9. Epub 2022 Oct 17. PMID 36245008
• Results publication: Brazeau AS, Messier V, Talbo MK, Gagnon C, Taleb N, Fortier I, Wu Z, Perkins BA, Carpentier AC, Bandini A, Rabasa-Lhoret R; BETTER Study Group. Self-reported Severe and Nonsevere Hypoglycemia in Type 1 Diabetes: Population Surveillance Through the BETTER Patient Engagement Registry: Development and Baseline Characteristics. Can J Diabetes. 2022 Dec;46(8):813-821. doi: 10.1016/j.jcjd.2022.05.010. Epub 2022 May 28. PMID 35835670

• Remi Rabasa-Lhoret, Principal investigator, Institut de Recherches Cliniques de Montreal