Data Access
Learn about the steps for external research teams to access PdP data below.
Our Data
For more information about the cohort and the measures collected, please refer to the sources below. You can click each button to be taken directly to the corresponding page.
How to Access the Data
1
Inquiry & Feasibility
Connect with the team to express interest in accessing study data. A member of the research team will review and determine fit of research project.
2
Data Access & Request
Complete and submit the Data Access & Request Form provided by the team. You will be asked to provide a research proposal and specify:
* Rationale for secondary data use
* Research question(s)
* Proposed research and statistical methodologies
* Expected outcomes
* Possible impact of results
* Knowledge translation plans
* Access to funding (where applicable)
3
Data Agreements
Prior to data being transferred, the following is required:
* Approval from appropriate research ethics board
* Signed confidentiality agreement from all project, collaborators accessing the data
* Signed data agreement
4
Data Transfer
Data and/or research materials are shared through secure transfer.
Frequently Asked Questions
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The principal investigator (PI) leading the project must hold a research or academic appointment, be in good standing with their institution, and access the data with the intention of publishing the results. Trainees may access the data under the PI’s supervision. The PI is ultimately responsible for ensuring proper data access, storage, use, reporting, and return of the data.
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PdP operates on a cost‑recovery model. Costs will be determined on a case‑by‑case basis.
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Data are released once all requirements have been met, so timelines vary by request.
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The project must have a valid certificate of ethics review from a Research Ethics Board, and the research questions must be established before submitting a data access application.
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The dataset that is provided for a project is only to be used for the approved project. A new request and dataset are to be created for subsequent projects.
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There is no limit on the number of data variables you can request, but all variables selected must align with the research questions stated in the application and will be reviewed by the research team.
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Researchers are encouraged to review the variables carefully before submitting their application. Additional variables can be requested later, but these will be processed on a non‑priority basis. Depending on the number of additional variables requested, an amendment to the project may be required. Additional fees will apply for follow-up data requests.
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Although there is no formal time limit on data use, study teams are expected to work with the data in a timely and responsible manner, with the goal of producing outputs such as posters, journal articles, or conference presentations.
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The study has developed an Access and Acknowledgement Guideline, which will be provided to you at data transfer and is part of our data sharing agreement. Please refer to these guidelines for more information.
In addition, the study's protocol and data in brief papers are linked above.
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We encourage data users to consult the questionnaires or variable dictionaries first, as these provide detailed information on how each question was asked. The following study overview also outlines what was collected at each timepoint: Condensed Overview of Surveys.
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The principal investigator listed on the project must inform the study team of any changes to the project personnel. The study team will review the amendment and let you know if any additional documentation is required, such as a confidentiality agreement.
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No. The study actively supports researchers in accessing and analyzing any of the available data.
However, we do curate a list of topics and research questions that are already under investigation, and we encourage researchers to propose new questions that are not currently being addressed by another team.
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No. Our ethics approval doesn’t allow looking through the data first and then deciding what the research question should be. Any request to access the data must come with a proposal that clearly defines the research question(s) from the start.