Contract for Access and Use of Data
Quebec Pain Registry (“Registry”)
Contract for Access and Use of Data (“Access Agreement”)
This Access Agreement is entered into between the Quebec Pain Registry (“Registry”) and the undersigned Applicant (“Researcher”) as of the _____day of ________ 20__.
This agreement governs the terms on which access will be granted to the data contained in the Quebec Pain Registry (“Registry”)
The Principal Investigators of the Registry are the custodians of the data and hold such ownership rights as may exist in relation to such data. The have agreed to provide access, on a cost recovery model, to the database for research purposes only.
This “Access Agreement” is pursuant to the approval of the request for access by the Researcher under the provisions of the “Access Policy” to which the Researcher agrees to comply.
WHEREAS, Registry provides a database which provides anonymized data on chronic pain patients and which is available to Researchers
WHEREAS Researchers are to utilize this data for research purposes, when the research project meets the provisions of the “Access Policy”;
WHERAS, Researcher and Registry desire to enter into this Agreement to address the release and use of such data.
NOW THEREFORE, the parties agree as follows:
- Release of Information. Registry will provide to the Researcher for research purposes anonymized data as approved by the Scientific Review Committee and the Registry’s “Access Policy”
- Use and Disclosure Researcher agrees that the data will only be used for research purposes on the approved research request and which research is related to the cause, prevalence and/or treatment of chronic non-cancer pain.
- Confidentiality. Researcher agrees at all times to keep strictly confidential and ensure that the data users keep confidential the information and data pertaining to any data subjects. In particular, the Researcher undertakes not to use, or attempt to use or permit anyone other than data users to use the data on its own or in conjunctions with other data, to seek to discover the identity of any data subjects, to compromise or otherwise infringe the confidentiality of information on subjects and their right to privacy.
Researcher agrees that the confidentiality of the data received under this Agreement shall survive termination of this Agreement and shall continue in full force and effect indefinitely.
- Publication. Information generated from the data may be published on the provisos that:
- Information does not allow data subjects or groups of data subjects to be identified
- No damage or distress is or is likely to be caused to any data subject or groups of data subjects
- No attempt will be made to identify any data subjects
- Researcher agrees to acknowledge in any work based in whole or part on the data, the published paper from which the data derives, the version of the data and the role of the Registry and their funders. (see wording Schedule 1)
- Intellectual Property. Nothing in this agreement shall transfer to the Researcher any intellectual property rights relating to the data. The Researcher has the right to develop intellectual property based on comparisons with their own data.
- Public Information. If the application is approved by the Registry, information about the proposed research use can be posted on the Registry website. The information may include name and institution, title of the project and non-technical summary of the research question.
- Non-Transferable. This Agreement is not transferable, and the Researcher may not purport to assign it (in whole or in part) without the written consent of Registry.
- Liability. Researcher agrees to hold Registry harmless from and to indemnify it against all and any losses, fees, claims, demands and liabilities which may arise out of or in connection with the Researcher’s use of the data or database.
- Costs Researcher agrees to pay Registry, within 30 days of receipt of an invoice, the sum agreed upon in and listed in the “Data Request Fee Estimate”.
- Default and Termination If the Researcher fails to comply with commitments of this Agreement or the provisions of the “ Access Policy”, permission to access will terminate immediately and Registry reserves the right to take any action its deems appropriate with respect to the default, including a claim for damages. In addition, the Researcher shall not use any data or results arising from research with data already delivered.
- Severability and Survival In the event any provision of this Agreement is held to be unenforceable for any reason, the unenforceability shall not affect the remainder of this Agreement, which shall remain in full force and effect in accordance with its terms.
- Affiliates, Agents, Subsidiaries and Subcontractors. Researcher shall require that any agents, affiliates, subsidiaries or subcontractors to whom any Registry data is provided agree in writing to the same use and disclosure restrictions imposed on the Researcher by this agreement
- Governance This Agreement shall be governed under the laws of the Province of Quebec
In signing this Agreement, the Researcher or the Clinician agrees to be bound by the terms and the conditions of access set out in this Agreement and agrees to ensure that any of her/his data users comply with the terms and conditions of this Agreement.
This Agreement is made the______day of _________202_ BETWEEN
SIGNED for on behalf of The Quebec Pain Registry (“Registry”)
Name (printed characters) Signature
SIGNED by the researcher or the Clinician
Name (printed characters) Signature