The Diabetes Action Canada National Diabetes Repository
Networks
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Datasets
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Variables
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The Diabetes Action Canada National Diabetes Repository (NDR) was launched in 2018 and includes data from January 1999 until February 2022.
It is a Patient Partner co-created secure virtual environment of pseudonymized, de-identified and encrypted primary care health data.
The main objective of the National Diabetes Repository’s primary care health data is to offer a platform that supports both interventional and observational studies relevant to the implementation of effective methods for predicting, diagnosing, and preventing diabetes-related complications for all Canadians.
The specific objectives are to:
* Enable discovery and innovation and to identify the health concerns of those living with diabetes and to co-create research projects that address these concerns.
* Evaluate the prediction, diagnosis, and prevention of diabetes-related complications.
* Solve key issues concerning operations of research, quality improvement, and service infrastructure.
* Evaluate the prediction, diagnosis, and prevention of diabetes-related complications.
- Start Year
- 1999
- End Year
- 2022
- Supplementary Information
- NDR does not include data identifying Indigenous peoples and new immigrants, refugees, the homeless, and low-income individuals are under represented.
Visit NDR
| Investigators | Contacts |
|---|---|
Design
- Study design
- Registry
- Follow Up
- Supplementary Information
- A control group consisting of an age and sex matched cohort of patients who were not living with diabetes was added along with data from Manitoba and Newfoundland and Labrador as added in 2018.
Recruitment
- Recruitment Target
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- Individuals
Number of Participants
- Number of Participants
- 133,252
- Number of Participants with Biological Samples
- Supplementary Information
Access
Availability of data and biosamples
| Possible Access to Data | |
| Possible Access to Biosamples | |
| Other |
Availability of access information
On the study website : https://diabetesaction.ca/repository/
Timeline
Populations
This population is composed of patients with diabetes who are cared for by individual physicians or group practices.
Selection Criteria
- Newborns
- Twins
- Countries
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- Canada
- Territory
- Ethnic Origin
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- Health Status
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- Patients with a diagnosis of diabetes.
- Other Criteria
- Supplementary Information about selection criteria
Recruitment
- Sources of recruitment
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- Specific population
- Specific Population
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- Clinic patients
- Supplementary Information
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Under REB approval, EMR data of patients living with diabetes from existing primary care repositories collected in Ontario, Manitoba, Quebec, Alberta and Newfoundland and Labrador have been de-identified and forwarded from each PBRN’s repository to the National Diabetes Repository.
Number of Participants
- Number of Participants
- 113,464
- Number of Participants with Biological Samples
Data Collection Event
Information on clinical care data such as diabetes risk factors, clinical trial data, patient-reported outcome and experience measures, and sociodemographic elements is collected.
- Start Date
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1999-01
- End Date
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2022-02
- Data sources
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- Other : Electronic medical records
This population is composed of patients without diabetes who are aged and sex-matched to the group of diabetes patients.
Selection Criteria
- Newborns
- Twins
- Countries
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- Canada
- Territory
- Ethnic Origin
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- Health Status
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- Patients who are not diagnosed with diabetes.
- Other Criteria
Recruitment
- Sources of recruitment
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- Specific population
- Specific Population
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- Clinic patients
- Supplementary Information
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EMR data of non diabetic patients living collected in Manitoba, Newfoundland and Labrador have been de-identified and forwarded and merged into the Proof-of-Concept National Diabetes Repository for the case control.
Number of Participants
- Number of Participants
- 19,788
- Number of Participants with Biological Samples
- Supplementary Information about selection criteria
Data Collection Event
Information on clinical care data, clinical trial data, patient-reported outcome, and experience measures, and sociodemographic elements is collected.
- Start Date
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2018-01
- End Date
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2022-02
- Data sources
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- Administrative databases
- Data sources - Administrative databases
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- Health databases
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
Socio-demographic and economic characteristics
Age/birthdate
Sex/gender
Family and household structure
Education
Residence
Ethnicity, race and religion
Language
Labour force and retirement
Diseases
Endocrine, nutritional and metabolic diseases (E00-E90)
Injury, poisoning and certain other consequences of external causes (S00-T98)
Diseases without precise specification or falling into multiple categories
Medication and supplements
Medication and supplement intake
Posology and protocol of administration
Non-pharmacological interventions
Other and unspecified non-pharmacological interventions
Health and community care services utilization
Visits to health professionals
Death
Vital status
Cause of death
Other end of life or death-related information
Laboratory measures
Other laboratory measures
Administrative information
Identifiers
Date and time-related information
Physical and cognitive measure and biosample-related information
Data and sample collection center-related information
Other administrative information