Privacy Policy

1. Information We Collect

1.1 "Get Notified" Requests (trials Not Yet Recruiting)

When you ask to be notified about a trial that is not yet recruiting, we collect: name, email address, phone number, and ZIP code.

1.2 "More Info" Requests (trials Recruiting or Enrollment by Invitation)

When you request more information about an active trial, we collect: name, phone number, email address, and ZIP code.

1.3 "Notify Me" Requests (trials "Completed")

When you ask to be notified about similar clinical studies that may become available in the future for a trial listed as "Completed," we collect: name, email address, phone number, and ZIP code.

1.4 Volunteer Network Sign-Up

When you join our general Volunteer Network, we collect: name, phone number, ZIP code, and general health condition/interest area (selected from a dropdown menu).

Before joining, you will be asked to affirmatively check a separate consent box confirming that you understand how this information will be used.

General health condition information is treated by us as sensitive information. We collect it only with this affirmative, separate consent, and only for the purpose of matching you with potentially relevant trials and Research Teams, using the confirmation-based process described in Section 3 below.

1.5 Researcher / Sponsor Submissions

When a Researcher submits a trial or requests advertising, we collect: researcher name, organization, facility ZIP code, trial subject/title, study goals, timeline, and condition/disease information, along with any billing/contact details needed to process an advertising request.

1.6 Automatically Collected Information

Like most websites, we may automatically collect certain technical information when you visit, such as IP address, browser type, device information, pages viewed, and referring URLs, typically through cookies, log files, and similar technologies. See Section 7 (Cookies) below.

1.7 Information We Do Not Intentionally Collect

We do not ask for or intend to collect Social Security numbers, government ID numbers, insurance information, or detailed medical records. Please do not submit such information through our forms.

2. How We Use Your Information

We use the information described above to:

• Operate, maintain, and improve the Service;
• Notify you when a trial you're interested in begins recruiting or when your Volunteer Network profile appears to match a trial;
• For "Get Notified", "Notify Me" and "More Info" requests, forward your request and contact details to the relevant Research Team so they can reach out to you about that specific trial;
• For the Volunteer Network, identify potential trial matches based on your general condition/interest, notify you of the potential match, and -- only if you affirmatively respond to indicate interest -- share your contact information with that specific Research Team;
• Allow Researchers to list, manage, and (where applicable) pay to advertise trial information on the Service;
• Respond to inquiries and provide customer support;
• Maintain the security and integrity of the Service;
• Comply with legal obligations; and
• Analyze aggregate usage trends to improve the Service (using de-identified or aggregated data where possible).

We do not use your health-condition information to make medical decisions on your behalf, and we do not use it for targeted advertising to you.

3. How We Share Your Information

We are a matching and information platform -- sharing certain information with Research Teams is core to how the Service works. Specifically:

• With Research Teams/Sponsors:
  • "Get Notified", "Notify Me" and "More Info" requests: when you submit one of these requests, you are asking to be connected with the Research Team for that specific trial. We share your contact information (and relevant request details) with that Research Team so they -- not us -- can contact you directly.
  • Volunteer Network: your contact information is not shared automatically. We use your general condition/interest internally to identify potential trial matches, and notify you when a match is found. Your name, phone number, and ZIP code are shared with a specific Research Team only after you affirmatively respond to that match notification indicating interest. If you do not respond, or respond "no," your contact information is not released for that trial.
  • In all cases, Research Teams use the information they receive subject to their own privacy practices and applicable law (including any IRB-approved recruitment procedures); we encourage you to ask them about their own privacy practices when they contact you.
• With Service Providers: We may share information with vendors who perform services on our behalf (e.g., hosting, email/SMS delivery, analytics), under contractual confidentiality and data protection obligations.
• For Legal Reasons: We may disclose information if required by law, subpoena, or other legal process, or to protect the rights, property, or safety of OpenTrials, our users, or the public.
• Business Transfers: If OpenTrials is involved in a merger, acquisition, or sale of assets, personal information may be transferred as part of that transaction, subject to this Policy (or a policy providing equivalent protections).

We do not sell your name, contact information, or health-condition information to data brokers or for unrelated advertising purposes. Because certain U.S. state privacy laws define "sale" or "sharing" broadly (including, in some cases, disclosures made in exchange for a service or monetary benefit), and because Researchers may pay us for listing/advertising services, we treat the disclosures described above as within scope of applicable "sale/share" opt-out rights and provide the choices described in Section 6 below out of an abundance of caution.

4. Sensitive Health Information

Because we collect "general condition" information for the Volunteer Network, we:

• Collect it only with your clear, affirmative, separate consent at the point of collection;
• Use it solely to identify potential matches, and share it with a specific Research Team only after you affirmatively confirm interest in that match (see Section 3);
• Do not sell it to third parties for advertising or marketing unrelated to clinical trial matching; and
• Provide you the ability to review, correct, or delete this information at any time (see Section 6).

Note on applicable law: OpenTrials is not a healthcare provider, health plan, or healthcare clearinghouse, and we do not act as a "business associate" under the Health Insurance Portability and Accountability Act (HIPAA). As a result, information you submit to us is not protected by HIPAA in the way records held by your doctor would be. Instead, it is protected under this Privacy Policy and applicable law, including:

• The FTC Health Breach Notification Rule, which requires certain non-HIPAA-covered entities that handle personal health record information to notify affected individuals (and, in some cases, the FTC and media) following a data breach; and
• Applicable state consumer health data laws -- for example, Washington's My Health My Data Act, and similar laws in Nevada and Connecticut -- which may provide additional rights regarding "consumer health data."

We maintain administrative, technical, and physical safeguards designed to protect this information and have a breach response process in place consistent with these laws (see Section 8).

5. Data Retention

We retain personal information for as long as reasonably necessary to fulfill the purposes described in this Policy -- for example, for as long as a "Notify Me" request remains pending, or until you ask us to delete your information -- and thereafter as needed to comply with legal obligations, resolve disputes, and enforce our agreements. Researcher submission data is retained for the duration a listing is active plus a reasonable administrative period.

6. Your Choices and Rights

Depending on your state of residence, you may have rights to:

• Access the personal information we hold about you;
• Correct inaccurate information;
• Delete your personal information;
• Opt out of the sharing/disclosure of your information with Research Teams described in Section 3 going forward (note: for "Get Notified", "Notify Me" and "More Info" requests, opting out may mean we cannot forward that specific request, since sharing is how that service functions; for the Volunteer Network, you can opt out of future match notifications at any time without affecting matches you've already confirmed);
• Withdraw consent to future collection or use of your general condition information; and
• Non-discrimination for exercising your privacy rights.

To exercise any of these rights, contact us at [privacy email]. We will respond within the time required by applicable law. We may need to verify your identity before completing certain requests.

If you are a California resident, you may designate an authorized agent to submit requests on your behalf, subject to our ability to verify that authorization.

7. Cookies and Similar Technologies

We use cookies and similar technologies to operate the Service, remember preferences, and understand aggregate usage (e.g., via analytics tools). You can control cookies through your browser settings; disabling cookies may affect some Service functionality.

8. Data Security

We maintain administrative, technical, and physical safeguards designed to protect personal information from unauthorized access, use, or disclosure, including:

• Encryption at rest: Sensitive personal information, including contact details and general condition data, is encrypted in our database using industry-standard AES-256 encryption.
• Encryption in transit: Data transmitted between your browser and our servers is protected using TLS/HTTPS encryption.
• Access controls: Access to personal information is limited to personnel and systems that need it to operate the Service.
• Secure hosting infrastructure: Our infrastructure is hosted on servers with industry-standard security controls, including firewalls, restricted administrative access, and regular security monitoring.
• Breach response: We maintain a process for detecting, assessing, and responding to security incidents, including notification to affected individuals (and, where applicable, the FTC or other regulators) consistent with the FTC Health Breach Notification Rule and applicable state law.

However, no method of transmission or storage is 100% secure, and we cannot guarantee absolute security.

9. Children's Privacy

OpenTrials is not directed to children under 18, and we do not knowingly collect personal information from children under 18 without appropriate parental/guardian involvement. If you believe a child has provided us personal information, please contact us so we can delete it.

10. International Visitors

The Service is intended for use by individuals located in the United States, and clinical trial information is primarily sourced from the U.S. registry ClinicalTrials.gov. If you access the Service from outside the United States, your information will be transferred to and processed in the United States.

11. Changes to This Privacy Policy

We may update this Privacy Policy from time to time. We will post the updated version with a new "Last Updated" date, and, for material changes, provide additional notice as appropriate (e.g., a banner on the Service or direct notice for registered Researchers).