Privacy Policy

Who we are and what this policy covers

JoinAStudy.ca is operated by Trial Management Group Inc. (“TMG”, “we”, “us”), a Canadian company based in Toronto that supports a network of physician-led clinical research sites across Canada. We run this website to help people learn about clinical research and connect with studies that are looking for volunteers.

This policy explains how we handle personal information that we collect through:

• JoinAStudy.ca, in English and in French, including our study interest forms, the study-matching questionnaire, the community sign-up, study alerts, the newsletter sign-up and the contact form;
• our emails to you, including our newsletter;
• our advertising on Facebook and Instagram, including lead forms you fill in inside those apps;
• information you gave on the previous version of JoinAStudy.ca, which we moved to our new systems (see Information from our previous website).

It does not cover what a research site does once you start its screening or informed consent process. The research site is then responsible for your information under the privacy laws that apply to it, such as Ontario’s Personal Health Information Protection Act, and the study’s consent form explains how study data is handled. This policy also does not cover other websites we link to.

We follow Canada’s Personal Information Protection and Electronic Documents Act (PIPEDA), Quebec’s Act respecting the protection of personal information in the private sector, the private-sector privacy laws of Alberta and British Columbia where they apply, and Canada’s anti-spam legislation (CASL). Our services are intended for people in Canada.

The information we collect

You can read everything on JoinAStudy.ca without giving us any personal information. We only collect what you choose to give us in a form, plus a limited amount of technical information described below.

How we collect it

• Forms on our website. You type the information yourself. Each form explains what it is for and asks for your consent before you send it.
• Lead forms on Facebook and Instagram. When you answer one of our ads using a form inside those apps, Meta collects what you enter and makes it available to us. See Facebook, Instagram and our advertising.
• Conversations with our team. When you email us or speak with a member of our research team, we note what you tell us so we can help you.
• From research sites. A research site may tell us whether it was able to reach you and whether you went on to screening or joined the study, so that we don’t contact you about the same study twice and can see which of our services help people.
• From our email providers. We learn when an email to you bounces or when you unsubscribe, and our emails may tell us whether they were opened and which links were clicked.
• Automatically. Our web server, our spam protection and our forms record technical information when you use the site. Cookies and similar technologies are used only as described in our Cookie Policy; analytics and advertising cookies stay off unless you turn them on.

Why we use your information

We use your information only for these purposes:

1. To see which studies may fit you. We compare your answers with the main requirements of studies that are recruiting, and with the research sites enrolling people with your condition near where you live.
2. To contact you about the study you asked about, answer your questions and, if you wish, arrange a screening visit.
3. To connect you with the research site running the study, so that its team can contact you and start screening.
4. To tell you about future studies that may fit you, but only if you tick an optional box that allows this, or sign up for study alerts. If you allow this, we keep your answers in a profile so that we can search for studies that may suit you (see Matching and automated tools).
5. To send you our newsletter with health information and research updates, but only if you tick the optional box that allows this and confirm your email address.
6. To run and protect the website: to block spam and abuse, fix problems, and understand which pages and forms help people. We count form steps and cookie-banner choices without cookies or identifiers, and we use analytics cookies only if you allow them.
7. To understand which of our channels help people find studies, for example which campaign or website brought a request and whether it led to screening. We look at these results in totals, not to make decisions about you.
8. To measure our advertising, only if you allow advertising cookies, and never using your health information or form answers.
9. To keep records and meet our legal obligations: records of your consents, withdrawals and requests, and responses to lawful requests.

Your consent

Each form asks for your consent in separate checkboxes, and no box is ticked for you.

• Required to send a study form: your consent for us to collect and use your answers to check which studies may fit you, to contact you about them, and to share your information with the research site running the study (our forms call these “affiliated research clinics”: the physician-led clinics in our network listed on our Study Locations page). Without this consent we cannot consider you for a study.
• Required if you fill in a form for someone else: your confirmation that you are allowed to provide their information and, for a child, that you are their parent or legal guardian.
• Optional: keeping your information so that we can tell you about future studies.
• Optional: receiving our newsletter by email.
• Study alerts: when you sign up to hear about new studies, you agree that we may email you when a study opens in the health areas you choose. The newsletter is a separate, optional box.
• Community sign-up: you choose one or more of: our newsletter, being contacted by us or a research site in our network about studies that may fit your interests, and keeping your information to match you to future studies.

Saying no to an optional box never affects your request about a study. You can withdraw any consent at any time (see Your rights and choices). Withdrawing does not undo what was done before, and if you withdraw the required consent we will no longer be able to consider you for studies.

Sending a form is not the same as joining a study. If you are invited to take part, the study doctor will explain the study and ask for your separate written informed consent before anything happens.

Who we share it with

Study sponsors. We do not give sponsors or contract research organizations your name, contact details or answers. We may tell them how many people asked about a study, in numbers that do not identify anyone. If you later enrol in a study, the study’s consent form explains what coded information the research site sends to the sponsor.

Service providers may use your information only to provide their service to us, under agreements and terms that require them to protect it. Google and Meta may also use information that their own tools collect for their own purposes, under their own privacy policies. That is one reason analytics and advertising cookies are off until you choose to turn them on.

Our translation software works only on our published website content. It never receives your form answers or contact details.

If TMG’s business changes, for example through a merger or sale, your information could be transferred to the organization that continues the service. It would remain protected by this policy, and we would tell you about the change.

Facebook, Instagram and our advertising

Many people find us through our ads on Facebook and Instagram. Here is what happens to your information in each case.

When you click one of our ads

You arrive on a page of our website. The web address may include campaign tags that tell us which ad you came from. We keep those tags in your browser for the rest of your visit and record them with any form you send. A click identifier added by Meta is stored only if you allow advertising cookies.

When you use a lead form inside Facebook or Instagram

Meta collects the information you enter (for example your name and contact details) and makes it available to us. From then on we handle it as described in this policy. We ask our health questions on our own website, not in Meta’s lead forms, but Meta knows that you responded to an ad about a study. Meta’s own handling of information on its apps is governed by Meta’s Privacy Policy.

The Meta Pixel on our website

• It loads only if you accept marketing (advertising) cookies in our cookie banner. It is off until you do.
• Even with your consent, it never loads on pages about a condition, a study, a research site, a questionnaire or any other form, or on search results.
• We do not send Meta your name, email address, phone number, date of birth or form answers, and we have switched off Meta’s automatic advanced matching.
• When it runs, Meta receives technical information such as your IP address, browser, the address of the page and cookie identifiers. Meta may link this to your Facebook or Instagram account and use it for its own purposes.

We do not upload lists of people who contacted us to Meta or other advertising platforms, and we do not build advertising audiences from the health pages you visit.

Matching and automated tools

• After you send the questionnaire, the message you see depends on whether studies are open in the health area you chose. It is not a decision about you, and our team still reviews every request.
• Our software sorts requests by health area and highlights studies that may suit you, so that our team can respond faster. It does not decide whether you are eligible. Only the study doctor can decide whether you qualify for a study.
• Your study-matching profile. If you tick the optional box to keep your information for future studies and answer the questionnaire for yourself, we copy your answers into a profile linked to your contact record. Our team searches these profiles to find people who may fit a new study, and then contacts them. Quebec law calls this “profiling”. It is off unless you tick that box. To limit what we keep, the profile stores your birth year instead of your date of birth and your body mass index instead of your height and weight, and it never includes free-text answers or answers you gave for someone else. The full form you sent is also kept as a record.
• Study alerts. When a study opens, our system lists the people who asked to hear about that health area. A member of our team reviews the list before any alert is sent.

You can ask us how our matching works, which information it uses, and to see or correct your profile. You can leave the future-studies list at any time, which deletes your profile answers.

Where your information is stored

Our website, our forms, our contact database and their backups are hosted on servers in Canada. Some of our service providers may store or process information in the United States or other countries: Mailchimp (newsletter), Google (spam protection and, if you allow it, analytics), CleanTalk (spam protection, on servers in the United States and the European Union), Meta (lead forms and, if you allow it, advertising measurement) and Microsoft (staff email). Information held outside Canada is subject to the laws of that country and may be accessed by its courts, law enforcement and national security authorities.

If you live in Quebec: your information may be communicated outside Quebec, for example to our team in Ontario, to a research site in another province, or to a service provider outside Canada. Before that happens, we assess the privacy risks as Quebec law requires and put protections in place by contract.

How long we keep it

We keep your information until you withdraw your consent or ask us to delete it. While we hold it, we use it only for the purposes you agreed to.

When you withdraw your consent or ask us to delete your information:

• we stop using it for the purposes you withdrew from right away, and within 10 business days for emails;
• we delete it or make it anonymous within 30 days;
• we keep a minimal record (your email address and the date of your request) so that we respect your choice and don’t contact you again;
• copies can remain in our protected backups for a limited time; we don’t use them except to recover from a system failure, and if we ever restore one, we apply your request again.

Information a research site already received for screening is kept by that site under the rules that apply to it. We will pass your request on to the site if you ask us to. We may keep statistics that cannot identify you.

How we protect it

• Information travels between your browser and our website over encrypted connections (HTTPS).
• Our website, contact database and backups are hosted in Canada. Our forms are protected against spam and automated abuse, and our sign-in pages against password guessing.
• Only TMG staff who need your information for their work can see it, through individual accounts, and they are bound by confidentiality obligations.
• Research sites and service providers must protect the information they receive.
• We assess privacy risks before introducing new systems that handle personal information.
• We keep a record of every privacy incident. If an incident creates a real risk of significant harm to you, we will notify you and the Privacy Commissioner of Canada, and in Quebec the Commission d’accès à l’information, as the law requires.

No system is perfectly secure. Please don’t send health details by regular email; use our forms instead.

Your rights and choices

You can ask us to:

• see the personal information we hold about you, including your study-matching profile, and learn how it has been used and to whom it has been given;
• correct information that is wrong or incomplete;
• withdraw a consent, for example to stop receiving emails or to leave the future-studies list;
• delete your information;
• receive the information you gave us in a structured, commonly used electronic format, which Quebec residents have a right to;
• explain how our matching works and which information it uses.

How to make a request: email privacy@joinastudy.ca from the email address you used with us, or write to the address in Contact us. We may ask you to confirm your identity. We respond within 30 days, and requests are free. If the law requires or allows us to refuse part of a request, we will tell you why and how to complain.

Quick choices:

• every email we send has an unsubscribe link;
• our yearly reminder to people on the future-studies list has a link to leave the list;
• you can change your cookie choices at any time from the “Cookie choices” link at the bottom of every page.

Children and people you care for

Our website is meant for adults. If you are under 18, you cannot send our study forms for yourself: a parent or legal guardian can fill them in for you. Our forms check this.

If a study is open to children, or to an adult who cannot decide alone, a parent, legal guardian or other authorized person fills in the form, confirms that they are allowed to act for that person and gives consent on their behalf. In Quebec, a parent or tutor must consent for a child under 14. Answers given for someone else are kept with the request but are never added to a study-matching profile.

We do not knowingly collect information directly from children. If we learn that we have, we delete it.

Emails and other messages

• About your request: after you send a form, we email you to confirm it and to follow up about the study you asked about.
• Study alerts: we email you when a study opens in the health areas you chose, only if you signed up for alerts or allowed us to contact you about future studies.
• Yearly reminder: if you are on our future-studies list, we remind you once a year what we keep and how to leave.
• Newsletter: sent through Mailchimp, only if you ticked the box that allows it and confirmed your email address.
• Every email identifies JoinAStudy.ca and Trial Management Group Inc., gives our mailing address and includes an unsubscribe link. We act on unsubscribe requests within 10 business days.
• Our emails may record whether they were opened and which links were clicked. We use this only to improve our emails.
• We keep a record of your email consents, as the law requires.

Information from our previous website

If you used an earlier version of JoinAStudy.ca, we moved the information you gave us then (for example your contact details, newsletter subscription and questionnaire answers) to our new systems. It is covered by this policy, and you have the same rights over it.

• We use it only for what you agreed to at the time. If you subscribed to our newsletter, you will keep receiving it until you unsubscribe.
• We will not use your earlier answers to contact you about new studies unless you confirm that you want us to.
• If you subscribed to our newsletter on the previous website, Mailchimp may also hold other details you gave at the time.

How we manage privacy

• TMG’s Privacy Officer is responsible for how we protect personal information and for this policy.
• Staff access is limited to what each role needs. Staff are trained on privacy and confidentiality.
• We keep internal rules on how long information is kept and how it is securely deleted.
• We assess privacy risks before new systems or projects that involve personal information, and before information leaves Quebec.
• We keep a register of privacy incidents and handle complaints through the Privacy Officer.
• We review this policy at least once a year and whenever our practices change.

Changes to this policy

When we update this policy, we change the date at the top and record the change in the version history below. If a change is significant, we will tell you on the website or by email before it takes effect. We will ask for your consent again before using your information for a new purpose.

Contact us and complaints

Privacy Officer, Trial Management Group Inc.
Email: privacy@joinastudy.ca
Mail: 42 St Clair Avenue East, Toronto, Ontario M4T 1M9

Please contact us first so we can try to resolve your concern. You also have the right to complain to a privacy regulator:

• Office of the Privacy Commissioner of Canada: priv.gc.ca
• Quebec residents: Commission d’accès à l’information du Québec, cai.gouv.qc.ca
• Alberta residents: Office of the Information and Privacy Commissioner of Alberta, oipc.ab.ca
• British Columbia residents: Office of the Information and Privacy Commissioner for British Columbia, oipc.bc.ca