National Diabetes Repository

National Diabetes Repository

Data Dictionary

Our data is summarized by tables and data elements. Here, you can see the name of the data elements, the description of the data fields and a format sample of the data contained in the fields. Additionally, we report on the completeness of the data fields.

Data Dictionary

Dictionnaire de donnes

Summary Data

To help you understand the cohort, we provide 3 tables that outline the Rural / Urban Distribution, the Neighbourhood income levels and the comorbidities in low, mid and high-income neighbourhoods. (The NDR uses the second digit of the postal code to determine if a patient lives in a rural or urban area.

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Request Access

Canadian Researchers can request access to the NDR by filling in a electronic application. Once submitted, a member from the Digital Health team will get back to you.

Request Access

Diabetes Action Canada has developed a National Diabetes Repository to help monitor and prevent complications arising from diabetes. Through enhanced informatics, this repository will apply privacy-aware methods to safely contain and link data (primary care EMR, retinopathy, patient reported experiences, and clinical trial data) and make it available to approved investigators for secondary research purposes.

Current & Active Projects

Data Privacy & Security

Privacy and Security have been paramount in scoping the requirements for the Repository. Rigorous privacy practices have been embedded into the foundation of the Repository and have been incorporated into all our policies and procedures. This allows us to provide access to researchers without compromising data security.

The physical hardware is located at the PHIPA-compliant Centre for Advanced Computing (CAC) at Queen’s University. The CAC is aligned to ISO-27002 information security standards to implement controls regarding the safeguarding of data.

Data Security

Compliant to ISO 27002 standards and PHIPA.

Overview

Governance

Oversight over the use of the data through a robust Research Governing Committee where 50% of the members are patients. RGC Framework

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Privacy

De-identified and coded individual level data. Privacy-by-Design framework. REB Approved Project specific datasets.

Research Environment

Secure Analytic Virtual Environment provides SPSS, R Studio and Python.

SOPs and TORs

We are transparent in our decision making process.

Overview