Data Access

The principal investigator (PI) listed on the project must have a research or academic appointment, be in good standing with their respective institution, and access the data with the intention of publishing results. Trainees of the PI, with oversight from the PI, may access the data. The PI is ultimately responsible to ensure appropriate data access, storage, use, reporting and return of the data.

The research study data is not available to for-profit institutions or the public domain. 

In some projects, AOF operates on a cost-recovery basis. This will be determined on a case-by-case basis.

Data is given out once all criteria is met, therefore timelines vary between requests. Most requests made from researchers from the University of Calgary are completed with 2-3 weeks from the time that all documentation is received. If data sharing requires an agreement between separate institutions, it may take 3-4 months to execute that type of agreement. 

The project must have a certificate of ethics review from a Research Ethics Board, and a research question(s) must be determined before making application for data. 

The dataset that is provided for a project is only to be used for that project. This is keeping in line with University of Calgary data sharing policies. A new request and dataset are to be created for subsequent projects.

Although there is no limit on the number of data variables you can request, all variables selected must align with the research question(s) stated in the application and will be reviewed by the research team.

Researchers are encouraged to review the variable dictionaries thoroughly before submitting their application. Additional data variables can be provided subsequently, but on a non-priority basis. An amendment to the project may be required depending on the number of additional variables sought.

While there is no set time limit on data use, there is an expectation that the investigator be using the data in a timely and responsible manner with the intention of publishing (poster presentations, articles in a research journal, conference presentations, as a few examples). 

Most projects last approximately two years. The research team reserves the right to request data to be returned if investigators are not utilizing the data.

Once the project is complete, the data is to be returned back to the study. The data will then be stored and archived in our records in its last modified state.

The study has developed detailed Access and Acknowledgement Guidelines, which will be provided to you at data transfer. Please refer to these guidelines for more information.

In addition, the study's cohort profile papers (2013 and 2017) are available on our website.

We encourage data users to first refer to either the questionnaires or the variable dictionaries to obtain specific information about how the questions were asked. The study has some information on scales and scoring that can be supplied upon request, and the research team can also answer specific questions about the data.

The principal investigator listed on the project will need to notify the study of changes to the project team. A Data Access Amendment can be completed and submitted to the team and you will be notified if any additional information is required from the research team (e.g., confidentiality agreement).

No. The study encourages the research community to access and analyze any of the data we have available, either independently or in collaboration with investigators of the research team.

No. The study’s ethics does not allow for ‘data mining’ to determine research question(s) for a project. All data access requests must include a proposal that clearly outlines the research question(s).