Research

Research Requests

Submitting Research Requests

A Research Request is any request related to a research project. This includes requests for data, tissue/organ/blood samples, clinical interventions or for consultations. If you would like to submit a research request, please ensure the following requirements are met:

• Requests should generally belong to one of the following categories: clinical trials requesting donated organs or tissues related to donation and transplant research; knowledge translation; interventional studies; basic research; epidemiology; health outcomes; quality of life studies.
• Requests should support the potential to increase registration and consent rates; increase organ and tissue donor numbers; increase the number of transplants; improve transplant outcomes; or ensure data quality/validation that supports donation and/or transplant clinical practice.
• Requestor/Principal Investigator must be working or training at an academic centre, non-profit institution, or public hospital.
• Requestor/Principal Investigator must take responsibility for obtaining funding (if applicable).
• Requestor/Principal Investigator must take responsibility for Research Ethics Board approval (if applicable).
• Requestor/Principal Investigator must complete the Research Request Form and submit the request electronically to beth.paltser@ontariohealth.ca.

If your request does not meet the above requirements you may still be able to submit a data request to TGLN:

• If you are a member of the public, please see Access to Information
• If you are a journalist, please visit our Media Page.

Additional Guidelines for Submitting Research Requests

• Research proposals should be innovative, and involve the novel implementation of interventions in Ontario.
• The successful Requestor/Principal Investigator must provide evidence of appropriate Research Ethics Board approval, along with consent forms where human subjects are involved in the study before data is released.
• The amount of each project budget will include direct costs (labour and study costs), study drug costs (if applicable), and indirect costs (publication, and software license fees).
• TGLN’s institutional costs will also be considered (see below). A description of anticipated requirements of TGLN staff (protocol development, data acquisition, statistical analysis, manuscript preparation and review) is required.
• The Requestor/Principal Investigator will include letters of funding, research ethics board approval, and a free form copy of their curriculum vitae (CV).

Notice of Acceptance of Research Requests

Depending on the nature of the request, applications will be reviewed and assessed by TGLN’s Research and Data Request Committee, where appropriate. Notice of Acceptance or Notice of Application Status (e.g. if more information is required) will be within a maximum of four (4) weeks from the date the application is submitted. Requests will be evaluated based on the following criteria:

• Project appropriateness and feasibility
• Project impact and timelines
• Project’s requirement for and return on TGLN resources (see Cost Recovery considerations below)

Requirements of Successful Research Requestors/Principal Investigators

Requestors/Principal Investigators will be required to:

• Provide TGLN with progress reports, where applicable.
• Comply with the Personal Health Information Protection Act, the Freedom of Information and Protection of Privacy Act, the Gift of Life Act, and TGLN’s privacy and legal requirements, including but not limited to acknowledging that data and records requested may contain personal health information including potentially identifiable information such as dates, diagnoses, names of patients, and hospitals.
• Conform to TGLN’s Privacy Terms of Use Agreements and/or Data Sharing Agreements, where applicable.
• Securely destroy or return the data at the end of the approved period of use, in accordance with TGLN specifications as outlined in the Privacy Terms of Use Agreements or Data Sharing Agreements.
• Provide TGLN with the opportunity to review the final manuscript prior to submission for publication.
• Share a copy of proposed publications with TGLN upon submission for publication or other public disclosure.
• Acknowledge collaboration or partnership with TGLN.
• Submit Research Ethics Board approval.
• Provide education to TGLN staff, as applicable.

Authorship/Non-Author Contributions for Research Requests

Acknowledgement of TGLN’s time and resources for all requests is appropriate. A discussion about authorship should occur for all requests that require more from TGLN than simple data acquisition. TGLN encourages Requestors/Principal Investigators to follow the International Committee of Medical Journal Editors (ICMJE) recommendations for defining the role of authors and contributors.

The ICMJE recommends the following four criteria be used to determine authorship:

• Substantial contributions to the conception or design of the work; or the acquisition, analysis, or interpretation of data for the work; AND
• Drafting the work or revising it critically for important intellectual content; AND
• Final approval of the version to be published; AND
• Agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Further, though contributors who do not meet all of the above criteria should not be listed as authors, they should be acknowledged. [i]

Suggested statements for acknowledgement include:

• “This research/presentation/initiative was supported by Ontario Health (Trillium Gift of Life Network)”; or
• “This research/presentation/initiative research was supported by Ontario Health (Trillium Gift of Life Network); however, the conclusions do not necessarily represent the views of the organization.”

Cost Recovery Considerations

If you have any questions about the cost recovery model please contact the Program Manager, Research at beth.paltser@ontariohealth.ca.

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[1] International Committee of Medical Journal Editors. 2017. “Defining the Role of Authors and Contributors.” Accessed February 23, 2017. http://www.icmje.org/recommendations/browse/roles-and-responsibilities/defining-the-role-of-authors-and-contributors.html.