Glossary
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Clinical Trials Quebec has developed an Information Hub that includes several Direct Services to Users designed to inform, mobilize and engage them in clinical research in Quebec.
Users are not required to disclose any Personal Information to use the Information Hub, except when they use the Support Service. In such a case, Clinical Trials Quebec undertakes to safeguard the confidentiality of all Personal Information, as described in the Privacy Policy specifically applicable to this Service (available here).
To make Users aware of the privacy practices that have been implemented, Clinical Trials Quebec has drawn up this Privacy Policy, which summarizes: (i) the types of Personal Information that is collected and the situations that may lead to such a collection; (ii) the reasons why the Personal Information is requested; (iii) the ways the Personal Information is used and protected; and (iv) the circumstances where the Personal Information may be disclosed to Authorized Subcontractors or other persons if required or permitted by law. This Privacy Policy also describes the Users’ rights, the security measures that have been put in place, and the applicable procedure in the event of a breach of privacy. Click the following links to access the Privacy Policy sections:
1. DEFINITIONS AND INTERPRETATION
1.1 Definitions.
The terms in uppercase letters used in this Privacy Policy shall have the following meaning:
- Other Purposes refers to any processing for any purpose authorized by a User or under the law, including the use of Personal Information for purposes consistent with the initial purposes or the processing of Depersonalized Information for statistical, study or research purposes, or to develop, assess or improve the Information Hub.
- Information Hub refers to the Clinical Trials Quebec Information Hub, a web platform found at www.clinicaltrialsquebec.com (or subsequently at any other address), including any Direct Service to Users and any Content.
- Content refers to information, guides, tools and other content available on the Information Hub.
- Clinical Trials Quebec refers to CATALIS Québec, a not-for-profit organization created under the Canada Not-for-Profit Corporations Act, S.C. 2009, c. 23, also doing business under the name of “Clinical Trials Quebec” and conducting this initiative under that name.
- Depersonalized Information refers to any information that no longer directly identifies a person.
- Personal Information includes any information relating to an individual that allows said individual to be directly or indirectly identified. The notion of personal information includes health-related information.
- Services refers to the support services, patient organization directories, the public registry of clinical trials in Quebec, and any other service that may be provided for educational or informational purposes on the Information Hub, including any feature and functionality.
- Authorized Subcontractors refers to any person who is assisting Clinical Trials Quebec with the development or supply of the Information Hub and who requires certain data (including Personal Information) to do so.
- Cookies refers to the small text files placed on a device’s browser when a User accesses or uses the Information Hub, and that may be temporary (and disappear when the devices are closed) or permanent (and remain on the browser even after the devices have been turned off).
- User refers to a user, health care professional or potential patient (including their caregivers and/or legal representatives) who would like to obtain information or support relating to clinical trials conducted in Quebec or elsewhere in Canada or the world (in the absence of such clinical trials in Quebec).
1.2 Interpretation.
Unless the context indicates otherwise, grammatical variations of any defined term shall have the same meaning, and the singular shall include the plural and the masculine shall include the feminine (and vice versa).
2. COLLECTION AND USE OF PERSONAL INFORMATION
No Personal Information is required to use the Information Hub, unless a User uses the Support Service. However, a User may choose to disclose Personal Information to Clinical Trials Quebec in connection with an inquiry, for instance. Lastly, certain Authorized Subcontractors may handle information in relation to certain Services. In any event, such Personal Information shall only be collected and processed for the sole purposes indicated in this Privacy Policy.
2.1 Information provided by Users
No Personal Information shall be provided as part of the Services, unless Users decide to disclose the Personal Information or when they wish to use the Support Service:
2.1.1 Support Service : As part of the Support Service (including clinical trial services and alerts in the event of new trials), Users shall disclose Personal Information so that Clinical Trials Quebec may provide them with the help they are seeking. Explicit consent is obtained from each User, and such consent and the information that is transmitted shall be kept in the User’s file. If a User makes an inquiry on behalf of another person and decides to disclose Personal Information regarding said person, the User in question shall confirm that they have the right to provide the information. (A User performing a search on behalf of another person does not have to include that person’s name or any other identifiers, nor does Clinical Trials Quebec wish to receive such information.) See the Support Service’s Privacy Policy, which applies to that Service in place of this policy.
2.1.2 Comments, questions and inquiries: A User may decide to provide certain Personal Information (such as their name and email, and their opinion/observations) if the User contacts Clinical Trials Quebec to obtain information on its Services or any other topic. Clinical Trials Quebec shall use that Personal Information to respond to the User’s communication. Such Personal Information may also be used for other purposes.
2.1.3 Content: A User does not need to provide any Personal Information to consult the Content. However, certain information may be collected by Cookies, as described below.
2.1.4 Directories of patient organizations: A User does not need to provide any Personal Information to consult the Content. However, certain information may be collected by Cookies, as described below.
If new services are made available, further collection and processing of Personal Information may then be required. In such a case, Clinical Trials Quebec shall notify Users, as indicated in clause 7.1 below.
2.2 Information obtained from third parties or through technologies
Certain platforms and technologies may provide information:
2.2.1 Google Analytics and Cyberimpact. Google Analytics may collect data on a User’s interactions with the Information Hub. Such information shall then be processed and updated at the User’s next interaction with the Information Hub. To do so, Google Analytics places codes on the Information Hub that enable it to see the information that was viewed, as well as the browser and device that were used. Similarly, Cyberimpact technology may be used to obtain information on the communications that were sent (e.g., to determine whether an email was read). The above information will be collected in a depersonalized manner and may be used for other purposes.
2.2.2 Social media. Clinical Trials Quebec uses social media platforms such as X (Twitter) and LinkedIn, which enable anyone to follow them (or follow their initiative) and to add them to their list of contacts. In such a case, Clinical Trials Quebec has access to that person’s web pages and profile according to the chosen settings, as described in the privacy policies and terms of use applicable to those platforms. Clinical Trials Quebec also receives a notification and has access to tweets, links and/or other posts in which it is referenced. Each person must review the privacy settings applicable to their accounts/pages in order to validate the information that can be accessed by their contacts and limit such access, if necessary. Clinical Trials Quebec may wish to use certain information that is available on accounts or pages for other purposes; in such a case, that information will be in depersonalized form.
2.2.3 Information collected by Cookies and other technology. When a User accesses or uses the Information Hub, some information (e.g., regarding the browser that is used, the Internet Protocol (IP) address and the clicks/interactions that took place) may be collected using the following Cookies:
- Strictly Necessary Cookies: Strictly necessary cookies help services, content and the website to function properly, web pages to maintain their integrity and users to interact with functionalities. The website cannot function properly without these cookies.
- Preference Cookies: Preference cookies allow us to personalize and enhance the user experience by presenting customized features or content. Cookies store information that modifies the way the site behaves or what it displays, such as your language preference, or the region in which you are located.
- Analytics Cookies: These cookies collect data (such as date, time and frequency of use, pages viewed, features used, information provided and login information) to enable us to see how users interact with the services, content, and website. The statistics generated enable us to improve the content and design better features that enhance the User experience.
- Marketing Cookies: Marketing cookies are used to track visitors’ website browsing preferences. The objective is to use this data to present advertisements that are personalized to each user while making them relevant to the users and more targeted for third-party publishers or advertisers.
Other types of technologies may be used for the same reasons. Cookies and other technologies that are not essential (such as Analytics Cookies) may be blocked without any impact on the Information Hub. Blocking required Cookies (e.g., Functionality Cookies) may affect the Information Hub. These technologies and Cookies are temporary and will be removed once the browser is closed or the device is turned off. Anyone encountering problems may contact Clinical Trials Quebec.
3. DISCLOSURE/SHARING OF PERSONAL INFORMATION
Clinical Trials Quebec does not sell or otherwise market the Personal Information. In addition, said Personal Information is neither shared with or disclosed to any third parties or used for purposes other than those: (i) described in this Privacy Policy; (ii) required or authorized by law; and (iii) subject to valid consent by the Users involved.
3.1 Personal Information
3.1.1 Required disclosure to provide the Services: Personal Information may be disclosed to Semi-Web who assist Clinical Trials Quebec with the Information Hub. Such disclosure shall be limited to the Authorized Subcontractors who require it and are bound by confidentiality agreements, and shall be done in accordance with the law.
3.1.2 Corporate transaction/restructuring: Some Personal Information may be disclosed to a third party as part of a corporate transaction/restructuring if: (i) it is required to proceed with such restructuring/transaction; (ii) it occurs in such a way as to safeguard the privacy of the Personal Information; and (iii) it is done in accordance with the law.
3.1.3 Other: Personal Information may be used and disclosed by Clinical Trials Quebec acting reasonably, if the latter believes that this is: (i) required to comply with applicable laws, a legal procedure or government request; (ii) required to protect its rights; or (iii) otherwise permitted or required by law. Clinical Trials Quebec may also use, disclose or otherwise process any Personal Information as permitted by law, including for other purposes.
3.2 Depersonalized information
Users acknowledge and agree that Depersonalized Information (information that excludes their names or other identifiers) may be created based on the Personal Information, and used and otherwise processed for other purposes. Clinical Trials Quebec shall take reasonable measures to limit the risk that someone may identify a User based on the Depersonalized Information.
4. SECURITY AND PRIVACY INCIDENTS
4.1 Safeguards.
Clinical Trials Quebec has set up specific safeguards to ensure the privacy of the Personal Information that may be collected and that are reasonable given, in particular, its sensitivity, end use, quantity, distribution and medium. These safeguards include:
4.1.1 Limited collection and processing: Clinical Trials Quebec does not ask for Personal Information to be provided unless it is required to deliver the agreed-on Services, and does not collect and process Personal Information otherwise than as described in this Policy (or the privacy policy applicable to the Support Service).
4.1.2 Restricted access: Subject to applicable laws, access to any Personal Information is granted only to employees and representatives of Clinical Trials Quebec (and, if applicable, the Authorized Subcontractors) who require it, following the implementation of safeguards and in accordance with applicable laws.
4.1.3 Privacy Impact Assessment: Privacy Impact Assessments are conducted when required in accordance with legislation.
4.1.4 Securement during transit: If a User sends a request as part of the Services requiring the disclosure of Personal Information (e.g., Support Services), an HTTPS protocol is used to transfer the information, and the Personal Information is protected through Secure Sockets Layer (SSL) technology using server authentication and data encryption. Activation of the technology can be confirmed by looking at: (i) the browser’s address bar, which will display, depending on the browser, a lock icon to the left of the URL; and (ii) the URL address or browser address bar, where the first characters should change from “http” to “https.”
4.1.5 Secure data centres: The Information Hub is hosted on a secure private platform supplied by a reputable IT provider.
4.2 LIMITATIONS.
EVEN THOUGH THE INFORMATION HUB WAS CREATED USING MARKETABLE TECHNOLOGIES, ANY TECHNOLOGY – AS WELL AS ANY OTHER SERVICE/PLATFORM OR METHOD OF DELIVERY – IS NEVER INFALLIBLE OR FULLY PROTECTED FROM UNPREDICTABLE EVENTS, CYBER ATTACKS (AND OTHER ILLEGAL ACTS) OR MALFUNCTION, AND USERS MUST BE AWARE OF THE RISK ASSOCIATED WITH ANY DATA TRANSMISSIONS (INCLUDING ELECTRONIC TRANSMISSIONS). CLINICAL TRIALS QUEBEC THEREFORE CANNOT GUARANTEE THAT SUCH DATA (INCLUDING PERSONAL INFORMATION) WILL NEVER BE INTERCEPTED OR SUBJECT TO OTHER INCIDENTS. IN ADDITION, EVENTS AFFECTING DEVICES AND SYSTEMS (INCLUDING THOSE USED FOR THEIR ACCESS AND CONTROL) MAY OCCUR, AND UNWANTED COMMUNICATIONS AND INVITATIONS MAY BE RECEIVED. IF A USER RECEIVES A COMMUNICATION THAT APPEARS TO ORIGINATE FROM CLINICAL TRIALS QUEBEC REQUESTING FINANCIAL INFORMATION OR ANY OTHER PERSONAL INFORMATION (OTHER THAN THE INFORMATION PROVIDED AS PART OF THE SUPPORT SERVICES), USERS MUST REFRAIN FROM RESPONDING TO SUCH A COMMUNICATION. CLINICAL TRIALS QUEBEC WILL NEVER REQUEST FINANCIAL OR OTHER INFORMATION IN THIS MANNER. IF A USER HAS DISCLOSED PERSONAL INFORMATION IN RESPONSE TO A COMMUNICATION, A POP-UP WINDOW OR A SUSPICIOUS WEBSITE CLAIMING TO BE AFFILIATED WITH CLINICAL TRIALS QUEBEC, OR IF ONE OF THE PREVIOUS EVENTS SHOULD OCCUR, THEN THAT USER MUST IMMEDIATELY CONTACT CLINICAL TRIALS QUEBEC.
4.3 Privacy incident:
If Clinical Trials Quebec has reason to believe that a privacy incident involving Personal Information has occurred, Clinical Trials Quebec shall take reasonable measures to reduce the risk of harm and prevent any new incidents from occurring. If that incident presents a risk of serious harm, Clinical Trials Quebec shall notify the Commission d’accès à l’information as well as any Users concerned by the incident. Clinical Trials Quebec may also notify any person likely to reduce such a risk (by only disclosing the required Personal Information). Lastly, Clinical Trials Quebec shall comply with other legal requirements.
5. RETENTION OF PERSONAL INFORMATION
Clinical Trials Quebec shall only keep the Personal Information provided to it as part of the Services for the period of time required to carry out the purposes for which the information was collected. These permitted purposes include those required to: (i) deliver the applicable Services; (ii) comply with legislation or prevent any breaches; (iii) resolve a dispute; and (iv) ensure the implementation of this Privacy Policy. When the information is no longer required, it shall be destroyed or kept in anonymized form (for serious and legitimate reasons and in accordance with applicable legal requirements).
6. USERS’ RIGHTS AND COMMUNICATION WITH CLINICAL TRIALS QUEBEC
6.1 Users’ rights
Clinical Trials Quebec shall confirm the existence of any Personal Information it has regarding a User upon receiving a request to that effect by a person capable of making such a request, and shall disclose such Personal Information (by allowing the person in question to make a copy of it). Any person concerned may submit a correction request or exercise any other rights, as applicable, by contacting Clinical Trials Quebec and by complying with the applicable legal requirements.
6.2 Communication with Clinical Trials Quebec
Anyone may contact Clinical Trials Quebec for:
6.2.1 Questions, comments and inquiries: the Privacy Officer’s contact information is available below. Requests and inquiries will be dealt with expeditiously within the applicable legal time periods.
Privacy Officer
CATALIS Quebec
465 McGill Street, Suite 200
Montreal (Quebec) H2Y 2H1
vieprivee@catalisquebec.com
6.2.2 Unsubscribing from emails: this can be done at any time using the contact information indicated in point 6.2.1, or by clicking the unsubscribe link at the bottom of each email, or by responding to an email by indicating “Stop” or “Unsubscribe.”
7. MISCELLANEOUS PROVISIONS
7.1 Complete agreement.
This Privacy Policy, together with the Terms of Use, constitutes the complete agreement in connection with access to and use of the Information Hub (subject, however, to those that may be applicable to the Content from other sources and the Support Services covered by the documents that can be found here).
7.2 Amendments:
Clinical Trials Quebec may amend this Privacy Policy from time to time. Such modifications shall be made available by any means deemed acceptable by Clinical Trials Quebec (depending on the nature of the changes that were made). If a User does not agree with these changes, then they must stop accessing and using the Information Hub before the changes take effect; subsequently, any access and use shall constitute acceptance of these changes.
7.3 Hyperlinks to third-party sites:
The Information Hub (including any reports) may include hyperlinks to other sources, including third-party sites. Clinical Trials Quebec reiterates that these hyperlinks are included for information purposes only and that it does not endorse or control the content on these hyperlinks. Clinical Trials Quebec assumes no liability in relation to these other sources. Users choose whether or not to consult the hyperlinks, and must review the terms of use and privacy policies applicable to these sites.
7.4 Severability:
If a provision is in conflict with any law or is not subject to enforcement, then it shall be severable from the other provisions and deemed to be rewritten so as to be valid and enforceable while complying, inasmuch as possible, with its initial spirit and scope.
7.5 Force majeure:
Clinical Trials Quebec is not liable for any harm resulting from a case of force majeure.
7.6 Applicable laws:
This Privacy Policy is subject to the applicable laws in Quebec to the exclusion of any principle or rule that may lead to the application of foreign laws. Any dispute that cannot be resolved through direct negotiations in good faith shall be referred to the courts of the Province of Quebec, which will have exclusive jurisdiction to resolve such a dispute.
