BEhaviors, Therapies, TEchnologies and hypoglycemic Risk in Type 1 diabetes
Networks
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Datasets
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Variables
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The objectives of the BETTER registry are:
- To provide a general portrait of the population with type 1 diabetes in Canada in terms of demographics, treatment, frequency and consequences of hypoglycemia, lifestyle habits, and complications of diabetes;
- To measure the frequency and severity of hypoglycemic episodes;
- To evaluate the potential of new technologies and therapies to reduce the frequency of hypoglycemia.
- Start Year
- 2019
Visit BETTER
| Investigators | Contacts |
|---|---|
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Design
- Study design
- Registry
- Follow Up
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Adults: Participants are invited to answer an annual survey.
Children: Participants only complete one survey.
- Supplementary Information
- Parents are asked to answer the survey on behalf of participating children.
Recruitment
- Recruitment Target
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- Individuals
Number of Participants
- Number of Participants
- No Limit
- Number of Participants with Biological Samples
- Supplementary Information
- As of March 2024, there are 3,929 participants enrolled in BETTER.
Access
Availability of data and biosamples
| Possible Access to Data | |
| Possible Access to Biosamples | |
| Other |
Timeline
Populations
The population consists of individuals with type 1 diabetes who are at least 14 years old and are living in Canada.
Selection Criteria
- Minimum age
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14
- Newborns
- Twins
- Countries
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- Canada
- Territory
- Ethnic Origin
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- Health Status
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- Type 1 diabetes
Recruitment
- Sources of recruitment
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- General population
- Participants from existing studies
- General Population
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- Volunteer enrolment
- Supplementary Information
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Participants were recruited by voluntary enrolment through the study website. If parental authorization is provided, children who participated in the BETTER registry are invited to pursue their participation on their own once they are 14 years old.
- Participants from Existing Studies
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- BETTER
Number of Participants
- Number of Participants
- No Limit
- Number of Participants with Biological Samples
- No Limit
Data Collection Events
| # | Name | Description | Start | End |
|---|---|---|---|---|
| 0 |
BETTER - Adults - Baseline Phase 1
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Information is collected about demographics, treatment, frequency and consequences of hypoglycemia, lifestyle habits, and complications of diabetes. | 2019-04 | |
| 1 |
BETTER - Adults - Baseline Phase 2
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Information is collected about demographics, treatment, frequency and consequences of hypoglycemia, lifestyle habits, and complications of diabetes. Additionally, participants provide results ... | 2019-04 | |
| 2 |
BETTER - Adults - Baseline Phase 3
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Information is collected about demographics, treatment, current medications taken, frequency and consequences of hypoglycemia, lifestyle habits, and complications of diabetes. Participants answer ... | 2019-04 | |
| 3 |
BETTER - Adults - Follow-up 1
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Participants who answer Phase 1 and Phase 2 questionnaires at baseline complete a questionnaire collecting information about demographics, treatment, frequency and consequences of hypoglycemia, ... | 2020-04 | |
| 4 |
BETTER - Adults - Follow-up 2
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Participants who answer Phase 1 and Phase 2 questionnaires at baseline complete a questionnaire collecting information about demographics, treatment, frequency and consequences of hypoglycemia, ... | 2021-04 | |
| 5 |
BETTER - Adults - Follow-up 3
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Participants who answer Phase 1 and Phase 2 questionnaires at baseline complete a questionnaire collecting information about demographics, treatment, frequency and consequences of hypoglycemia, ... | 2022-04 | |
| 6 |
BETTER - Adults - Follow-up 4
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Participants who answer Phase 1 and Phase 2 questionnaires at baseline complete a questionnaire collecting information about demographics, treatment, frequency and consequences of hypoglycemia, ... | 2023-04 | |
| 7 |
BETTER - Adults - Follow-up 5
|
Participants who answer Phase 1 and Phase 2 questionnaires at baseline complete a questionnaire collecting information about demographics, treatment, frequency and consequences of hypoglycemia, ... | 2024-04 |
The population consists of children who are 13 years old or younger and living with type 1 diabetes in Canada.
Selection Criteria
- Maximum age
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13
- Newborns
- Twins
- Countries
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- Canada
- Territory
- Ethnic Origin
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- Health Status
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- Type 1 diabetes
Recruitment
- Sources of recruitment
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- General population
- General Population
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- Volunteer enrolment
- Supplementary Information
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Parents of children with type 1 diabetes were recruited by voluntary enrolment through the study website.
Number of Participants
- Number of Participants
- No Limit
- Number of Participants with Biological Samples
Data Collection Event
Information is collected about demographics, treatment, frequency and consequences of hypoglycemia, lifestyle habits, and complications of diabetes.
- Start Date
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2019-04
- Data sources
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- Questionnaires
Classifications
- Socio-demographic and economic characteristics
- Lifestyle and behaviours
- Birth, pregnancy and reproductive health history
- Perception of health, quality of life, development and functional limitations
- Diseases
- Symptoms and signs
- Medication and supplements
- Non-pharmacological interventions
- Health and community care services utilization
- Death
- Physical measures and assessments
- Laboratory measures
- Cognition, personality and psychological measures and assessments
- Life events, life plans, beliefs and values
- Preschool, school and work life
- Social environment and relationships
- Physical environment
- Administrative information
- Cognitive functioning
- Personality
- Psychological distress and emotions
- Other psychological measures and assessments
- Life events
- Beliefs and values
- Perception of health
- Quality of life
- Life course development
- Functional limitations
- Other perception of health, quality of life and functional limitation-related information
- Tobacco
- Alcohol
- Drugs
- Nutrition
- Breastfeeding
- Physical activity
- Sleep
- Sexual behaviours and orientation
- Technological devices
- Misbehaviour and criminality
- Other and unspecified lifestyle information
Socio-demographic and economic characteristics
Age/birthdate
Sex/gender
Twin
Family and household structure
Education
Residence
Citizenship and immigrant status
Ethnicity, race and religion
Labour force and retirement
Income, possessions, and benefits
Other socio-demographic and economic characteristics
Lifestyle and behaviours
Tobacco
Alcohol
Drugs
Nutrition
Physical activity
Sleep
Birth, pregnancy and reproductive health history
Puberty, menstruation, menopause and andropause
Pregnancy, delivery and birth
Perception of health, quality of life, development and functional limitations
Perception of health
Quality of life
Use of assistive devices
Other perception of health, quality of life and functional limitation-related information
Diseases
Diseases of the blood and blood-forming organs and certain disorders involving the immune mechanism (D50-D89)
Endocrine, nutritional and metabolic diseases (E00-E90)
Mental and behavioural disorders (F00-F99)
Diseases of the nervous system (G00-G99)
Diseases of the eye and adnexa (H00-H59)
Diseases of the circulatory system (I00-I99)
Diseases of the digestive system (K00-K93)
Diseases of the skin and subcutaneous tissue (L00-L99)
Diseases of the musculoskeletal system and connective tissue (M00-M99)
Diseases of the genitourinary system (N00-N99)
External causes of morbidity and mortality (V01-Y98)
Diseases without precise specification or falling into multiple categories
Medication and supplements
Medication and supplement intake
Posology and protocol of administration
Non-pharmacological interventions
Educational and health promotion interventions
Laboratory diagnosis interventions
Other and unspecified non-pharmacological interventions
Health and community care services utilization
Visits to health professionals
Hospitalizations
Community and social care
Other health and community care
Physical measures and assessments
Anthropometry
Muscles, skeleton and mobility
Laboratory measures
Biochemistry
Immunology
Cognition, personality and psychological measures and assessments
Cognitive functioning
Psychological distress and emotions
Life events, life plans, beliefs and values
Beliefs and values
Preschool, school and work life
Work life
Other preschool, school or work life-related information
Social environment and relationships
Social support
Other social environment characteristics
Administrative information
Identifiers
Date and time-related information
Questionnaire and interview-related information
Physical and cognitive measure and biosample-related information
Other administrative information
Psychological distress and emotions
Diabetes Distress Scale
Patient Health Questionnaire
Beliefs and values
Barriers to Physical Activity in Type 1 Diabetes
Quality of life
WHO Well-Being Index
Other perception of health, quality of life and functional limitation-related information
The Clarke Questionnaire
The Gold Questionnaire
Hyperglycemia Avoidance Scale
Hypoglycemic Confidence Scale
Hypoglycemia Fear Survey
Sleep
Pittsburgh Sleep Quality Index