Privacy Policy

Last updated: February 18, 2025

This Privacy Policy describes Our policies and procedures on the collection, use and disclosure of Your information when You use the Service and informs You about Your privacy rights and how Canadian and Quebec law protects You.

We are committed to protecting the privacy of individuals who participate in or interact with the Canadian Inflammatory Myopathy Study (CIMS). This Privacy Policy explains how we handle Personal Data collected through our website, www.cimstudy.ca, and in connection with our research activities.

Interpretation and Definitions

Interpretation

The words of which the initial letter is capitalized have meanings defined under the following conditions. The following definitions shall have the same meaning regardless of whether they appear in singular or in plural.

Definitions

Account: means a unique account created for You to access our Service or parts of our Service.
Affiliate: means an entity that controls, is controlled by or is under common control with a party, where “control” means ownership of 50% or more of the shares, equity interest or other securities entitled to vote for election of directors or other managing authority.
CIMS: (Referred to as either “the Company”, “We”, “Us” or “Our” in this Agreement) refers to the Canadian Inflammatory Myopathy Study, based at the Jewish General Hospital, Montreal.
Cookies: are small files placed on Your computer, mobile device or any other device by a website, containing the details of Your browsing history on that website among its many uses.
Country: refers to: Quebec, Canada
Device: means any device that can access the Service such as a computer, a cellphone or a digital tablet.
Personal Data: Is any information that relates to an identified or identifiable individual. For research participants, this may include, but is not limited to, health information (including medical history, test results, and treatment information), contact information, and demographic data.
Service: refers to the Website.
Service Provider: means any natural or legal person who processes the data on behalf of the Company.
Usage Data: refers to data collected automatically, either generated by the use of the Service or from the Service infrastructure itself.
Website: refers to Canadian Inflammatory Myopathy Study, accessible from www.cimstudy.ca
You: means the individual accessing or using the Service, or the company, or other legal entity on behalf of which such individual is accessing or using the Service, as applicable.

Collecting and Using Your Personal Data

Types of Data Collected

Personal Data

Email address
First name and last name
Usage Data

For research participants: Personal Data is collected directly through informed consent procedures, questionnaires, medical records, and biological samples. The specific Personal Data collected will be outlined in the consent form for each study.

Usage Data

Usage Data is collected automatically when using the Service. Usage Data may include information such as Your Device’s Internet Protocol address (e.g. IP address), browser type, browser version, the pages of our Service that You visit, the time and date of Your visit, the time spent on those pages, unique device identifiers and other diagnostic data.

When You access the Service by or through a mobile device, We may collect certain information automatically, including, but not limited to, the type of mobile device You use, Your mobile device unique ID, the IP address of Your mobile device, Your mobile operating system, the type of mobile Internet browser You use, unique device identifiers and other diagnostic data.

Tracking Technologies and Cookies

We use Cookies and similar tracking technologies to track the activity on Our Service and store certain information. The technologies We use may include:

Cookies or Browser Cookies: A cookie is a small file placed on Your Device. You can instruct Your browser to refuse all Cookies or to indicate when a Cookie is being sent. However, if You do not accept Cookies, You may not be able to use some parts of our Service.
Web Beacons: Certain sections of our Service and our emails may contain small electronic files known as web beacons that permit the Company to count users who have visited those pages or opened an email and for other related website statistics.

We use both Session and Persistent Cookies for the purposes set out below:

Necessary / Essential Cookies
Type: Session Cookies
Purpose: These Cookies are essential to provide You with services available through the Website and to enable You to use some of its features.
Cookies Policy / Notice Acceptance Cookies
Type: Persistent Cookies
Purpose: These Cookies identify if users have accepted the use of cookies on the Website.
Functionality Cookies
Type: Persistent Cookies
Purpose: These Cookies allow us to remember choices You make when You use the Website.

Use of Your Personal Data

The Company may use Personal Data for the following purposes:

To provide and maintain our Service
To contact You: To respond to inquiries and provide study-related information
To provide research participants with updates on the study, relevant research findings, and related events, provided they have given explicit consent
For data analysis, identifying usage trends, and service improvement

For Research Purposes:

To conduct the CIMS research study, including analyzing data, generating research findings, and publishing results
To comply with ethical and regulatory requirements, including those of the Research Ethics Board (REB)
To share de-identified or anonymized data with other researchers for collaborative research projects

Sharing Personal Information

With Service Providers: Only with signed privacy contracts
For business transfers: We will not share or transfer Your personal information
With Affiliates: We will not share Your information
With business partners: We will not share Your information
With other users: We do not allow sharing
With Your consent: Only with explicit consent

Retention of Your Personal Data

The Company will retain Your Personal Data only for as long as is necessary for the purposes set out in this Privacy Policy and in accordance with REB guidelines and applicable laws. We will retain and use Your Personal Data to the extent necessary to comply with our legal obligations, resolve disputes, and enforce our legal agreements and policies.

For research data, retention periods will be specified in the informed consent documents and will adhere to REB requirements. Data may be retained for longer periods for long-term follow-up studies or for the development of new research questions, subject to continued REB approval and participant consent (if applicable).

Data Minimization and Security

We use appropriate technical and organizational measures to protect Your Personal Data, including:

Encryption for data protection
Restricted access controls
Regular data backups
Security audits

Transfer of Your Personal Data

Your information may be transferred to and maintained on computers located outside of Your jurisdiction. Your consent to this Privacy Policy represents Your agreement to such transfers.

If Your Personal Data is transferred outside of Quebec or Canada, we will ensure that appropriate safeguards are in place to protect Your data, in accordance with applicable privacy laws.

Disclosure of Your Personal Data

Legal Requirements

We may disclose Your Personal Data if required to do so by law or in response to valid requests by public authorities. The Company may also disclose Your Personal Data in the good faith belief that such action is necessary to:

Comply with a legal obligation
Protect and defend the rights or property of the Company
Prevent or investigate possible wrongdoing
Protect the personal safety of users or the public
Protect against legal liability

Children’s Privacy

Our Service does not address anyone under the age of 13. We do not knowingly collect personally identifiable information from anyone under the age of 13. If You are a parent or guardian and You are aware that Your child has provided Us with Personal Data, please contact Us.

If the CIMS study involves the participation of children under the age of 18, we will obtain informed consent from their parents or legal guardians.

Links to Other Websites

Our Service may contain links to other websites that are not operated by Us. We strongly advise You to review the Privacy Policy of every site You visit. We have no control over and assume no responsibility for the content, privacy policies or practices of any third party sites or services.

Changes to this Privacy Policy

We may update Our Privacy Policy from time to time. We will notify You of any changes by posting the new Privacy Policy on this page. We will also notify research participants of any material changes that may affect their rights or the handling of their Personal Data. We will seek Your consent to any significant changes, as required by law and REB guidelines.

If you have any questions about this Privacy Policy, you can contact us:

By email: [CIMS contact email address]
By mail: Jewish General Hospital, Montreal, QC

For questions about your rights as a research participant, contact the Research Ethics Board (REB) at [REB Contact Information].