Last Updated: July 1, 2024

Passage Bio, Inc. (“Passage Bio,” “we,” “us,” and “our”) is a genetic medicines company developing transformative therapies for the treatment of central nervous system disorders. This Privacy Notice is designed to help you understand how we collect, use, and share your personal information and to help you understand and exercise your privacy rights.

SCOPE
PERSONAL INFORMATION WE COLLECT
HOW WE USE YOUR INFORMATION
HOW WE DISCLOSE YOUR INFORMATION
YOUR PRIVACY CHOICES AND RIGHTS
INTERNATIONAL DATA TRANSFERS
RETENTION OF PERSONAL INFORMATION
SUPPLEMENTAL NOTICE FOR EU RESIDENTS
CHILDREN’S INFORMATION
OTHER PROVISIONS
CONTACT US

1. SCOPE

This Privacy Notice applies to personal information processed by us, on our websites, related to clinical trials, patient support programs and other online or offline services. To make this Privacy Notice easier to read, our websites, and other services are collectively called “Services”. Passage Bio may provide additional privacy notices to individuals at the time we collect their personal information. For example, we provide a specific privacy notice to participants that describes our privacy practices in connection with conducting clinical trials or when you submit your information for recruitment to one of our clinical trials. Such notice will govern our use of your personal information related to the clinical trial.

2. PERSONAL INFORMATION WE COLLECT

The categories of personal information we collect depend on how you interact with us, our Services and the requirements of applicable law. For example, we may collect different information depending on whether you are a Clinical Trial Participant, Healthcare Professional, Patient Advocate, or visitor to our website. We collect information that you provide to us, information we obtain automatically when you use our Services, and information from other sources such as third-party services and organizations, as described below.

Personal Information You Provide to Us Directly

We may collect the following personal information that you provide to us.

Healthcare Professionals. If you are a Healthcare Professional, we may collect certain information such as your professional contact information, credential and institutional affiliations information, information about our programs and activities in which you have participated, our interactions with you, published papers, your photograph, and/or prescribing of our products and information in any agreements executed with us.
Enrollment and Clinical Trial Referral Information. When you enroll in our Services, such as our patient support programs or if you request to be matched to one of our clinical trial sites through one of our referral websites, we may collect information such as your name, email address, phone number, physical address, date of birth, and relevant information about your medical history.
Clinical Trial Participants. In addition to Enrollment and Clinical Trail Referral Information, our clinical trial sites may collect driver’s license, passport number, tax identification number, and health information related to your medications, medical history, medical insurance details, physical and mental health conditions, diagnoses, treatments, genetic information, and family medical history in connection with your participation in clinical trials. We collect such information only where you have provided your consent to disclose that information to us, as required by law.
Regulatory Information. We are also obligated to collect certain personal information to comply with regulatory requirements, including information relating to any adverse effects you may have experienced when using our products. We collect such information only where you have provided your consent to disclose that information to us, as required by law.
Patient Advocates. If you are a Patient Advocate, we may collect information such as your name, email address, and phone number.
Your Communications with Us. We may collect personal information, such as your name, email address, and business contact information, when you request information about our Services, register for email alerts, request customer or technical support, apply for a job or otherwise communicate with us.
Surveys. We may contact you to participate in surveys. If you decide to participate, you may be asked to provide certain information which may include personal information.
Business Development and Strategic Partnerships. We may collect personal information from individuals and third parties to assess and pursue potential business opportunities.
Job Applications. We may post job openings and opportunities on our Services. If you reply to one of these postings by submitting your application, CV and/or cover letter to us, we will collect and use your information to assess your qualifications.

Personal Information Collected Automatically

We may collect personal information automatically when you use our Services:

Automatic Data Collection. We may collect certain information automatically when you use our Services, such as your Internet protocol (IP) address, user settings, MAC address, cookie identifiers, mobile carrier, mobile advertising and other unique identifiers, browser or device information, location information (including approximate location derived from IP address), and Internet service provider. We may also automatically collect information regarding your use of our Services, such as pages that you visit before, during and after using our Services, information about the links you click, the types of content you interact with, the frequency and duration of your activities, and other information about how you use our Services.
Cookies, Pixel Tags/Web Beacons, and Other Technologies. We, as well as third parties that provide content, advertising, or other functionality on our Services, may use cookies, pixel tags, local storage, and other technologies (“Technologies”) to automatically collect information through your use of our Services.

Cookies. Cookies are small text files placed in device browsers that store preferences and facilitate and enhance your experience.
Pixel Tags/Web Beacons. A pixel tag (also known as a web beacon) is a piece of code embedded in our Services that collects information about engagement on our Services. The use of a pixel tag allows us to record, for example, that a user has visited a particular web page or clicked on a particular advertisement. We may also include web beacons in e-mails to understand whether messages have been opened, acted on, or forwarded.

See Section 5 below to understand your choices regarding these Technologies.

Information Collected from Other Sources

We may obtain information about you from other sources, including through referrals, third-party services, public sources, social media platforms, and other organizations. For example, if you are a Healthcare Professional, we may collect information such as hospital affiliation, license information, areas of interest, contact information such as address, email, and phone number, and other due diligence related information.

3. HOW WE USE YOUR PERSONAL INFORMATION

We use your information for a variety of business purposes, including to provide our Services, for administrative purposes, and to market our products and Services, as described below.

Provide Our Services

We use your information to fulfil our contract with you and provide you with our Services, such as:

Managing your information and accounts;
Providing access to certain areas, functionalities, and features of our Services;
Answering requests for customer or technical support;
Communicating with you;
Processing applications if you apply for a job, we post on our Services; and
Allowing you to register for events.

Administrative Purposes

We use your information for various administrative purposes, such as:

Pursuing our legitimate interests such as clinical trial recruitment, research and development (including commercial research), network and information security, and fraud prevention;
Detecting security incidents, protecting against malicious, deceptive, fraudulent or illegal activity, and prosecuting those responsible for that activity;
Carrying out analytics;
Measuring interest and engagement in our Services;
Short-term, transient use, such as contextual customization of ads;
Improving, upgrading or enhancing our Services;
Developing new products and Services;
Creating de-identified and/or aggregated information. If we create or receive de-identified information, we will not attempt to reidentify such information, unless permitted by, or required to comply with, applicable laws;
Ensuring internal quality control and safety;
Authenticating and verifying individual identities;
Debugging to identify and repair errors with our Services;
Auditing relating to interactions, transactions and other compliance activities;
Sharing personal information with third parties as needed to provide the Services;
Enforcing our agreements and policies; and
Carrying out activities that are required to comply with our legal obligations.

Advertising our Products and Services

We may use personal information to tailor and provide you with content and advertisements. We may provide you with these materials as permitted by applicable law.

Some of the ways we market to you include email campaigns, custom audiences advertising, and “interest-based” or “personalized advertising,” including through cross-device tracking.

If you have any questions about our advertising practices or if you would like to opt out of the use of your personal information for advertising purposes, you may contact us at any time as set forth below.

With Your Consent

We may use personal information for other purposes that are clearly disclosed to you at the time you provide personal information or with your consent.

Other Purposes

We also use your information for other purposes as requested by you or as permitted by applicable law.

4. HOW WE DISCLOSE YOUR PERSONAL INFORMATION

We disclose your information to third parties for a variety of business purposes, including to provide our Services, to protect us or others, or in the event of a major business transaction such as a merger, sale, or asset transfer, as described below.

Disclosures to Provide our Services

The categories of third parties with whom we may share your information are described below.

Clinical Research Organizations. If you participate in clinical trials and research, the clinical trial sites may disclose any personal information you provide in conjunction with your participation, to the Clinical Research Organization (“CRO”) we have partnered with, that is responsible for organizing the research or conducting the clinical trial. We endeavor not to collect clinical trial participant personal information directly.
Clinical Trial Sites. If you request to be matched with a clinical trial site through our referral website, we may share your personal information with the clinical trial site closest to you so that the clinical trial site can contact you about participating in the trial.
Service Providers. We may share your personal information with our third-party service providers, including clinical research organizations, companies providing services for our patient support program, and other service providers, who use that information to help us to provide our Services. This includes service providers that provide us with IT support, clinical trial services, site analytics, hosting, customer service, and related services. Some of the service providers we may use include:

Google Analytics. For more information, please visit Google Analytics’ Privacy Policy. To learn more about how to opt-out of Google Analytics’ use of your information, please click here.
LinkedIn Analytics. For more information about how LinkedIn uses your personal information, please visit LinkedIn Analytics’ Privacy Policy. To learn more about how to opt-out of LinkedIn’s use of your information, please click here.

Business Partners. We may share your personal information with business partners to provide you with a product or service you have requested. We may also share your personal information to business partners with whom we jointly offer products or services.
Affiliates. We may share your personal information with our company affiliates.
Advertising Partners. We may share your personal information with third-party advertising partners. These third-party advertising partners may set Technologies and other tracking tools on our Services to collect information regarding your activities and your device (e.g., your IP address, cookie identifiers, page(s) visited, location, time of day). These advertising partners may use this information (and similar information collected from other services) for purposes of delivering personalized advertisements to you when you visit digital properties within their networks. This practice is commonly referred to as “interest-based advertising” or “personalized advertising.” Some of the advertising Technologies we may use include:

Facebook Connect. For more information about Facebook’s use of your personal information, please visit Facebook’s Data Policy. To learn more about how to opt-out of Facebook’s use of your information, please click here while logged in to your Facebook account.

Disclosures to Protect Us or Others

We may access, preserve, and disclose any information we store associated with you to external parties if we, in good faith, believe doing so is required or appropriate to: comply with law enforcement or national security requests and legal process, such as a court order or subpoena; protect your, our, or others’ rights, property, or safety; enforce our policies or contracts; collect amounts owed to us; or assist with an investigation or prosecution of suspected or actual illegal activity.

Disclosure in the Event of Merger, Sale, or Other Asset Transfers

If we are involved in a merger, acquisition, financing due diligence, reorganization, bankruptcy, receivership, purchase or sale of assets, or transition of service to another provider, your information may be sold or transferred as part of such a transaction, as permitted by law and/or contract.

5. YOUR PRIVACY CHOICES AND RIGHTS

Your Privacy Choices. The privacy choices you may have about your personal information are determined by applicable law and are described below.

Email and Telephone Communications. If you receive an unwanted email from us, you can use the unsubscribe link found at the bottom of the email to opt out of receiving future emails. Note that you will continue to receive transaction-related emails regarding products or Services you have requested. We may also send you certain non-promotional communications regarding us and our Services, and you will not be able to opt out of those communications (e.g., communications regarding our Services or updates to our Terms or this Privacy Notice).
Text Messages. If we text you, you may opt out of receiving text messages from us by following the instructions in the text message you have received from us or by otherwise contacting us.
“Do Not Track.” Do Not Track (“DNT”) is a privacy preference that users can set in certain web browsers. Please note that we do not respond to or honor DNT signals or similar mechanisms transmitted by web browsers.
Cookies and Interest-Based Advertising. You may stop or restrict the placement of Technologies on your device or remove them by adjusting your preferences as your browser or device permits. However, if you adjust your preferences, our Services may not work properly. Please note that cookie-based opt-outs are not effective on mobile applications. However, you may opt-out of personalized advertisements on some mobile applications by following the instructions for Android, iOS and others.

The online advertising industry also provides websites from which you may opt out of receiving targeted ads from data partners and other advertising partners that participate in self-regulatory programs. You can access these and learn more about targeted advertising and consumer choice and privacy by visiting the Network Advertising Initiative, the Digital Advertising Alliance, the European Digital Advertising Alliance, and the Digital Advertising Alliance of Canada.

Please note you must separately opt out in each browser and on each device.

Your Privacy Rights. In accordance with applicable law, you may have the right to:

Access Personal Information about you, including: (i) confirming whether we are processing your personal information; (ii) obtaining access to or a copy of your personal information; and (iii) receiving an electronic copy of personal information that you have provided to us, or asking us to send that information to another company (the “right of data portability”);
Request Correction of your personal information where it is inaccurate or incomplete. In some cases, we may provide self-service tools that enable you to update your personal information;
Request Deletion of your personal information;
Request Restriction of or Object to our processing of your personal information; and
Withdraw your Consent to our processing of your personal information.

If you would like to exercise any of these rights, please contact us as set forth below or as otherwise instructed in the additional privacy notices provided at the time we collected your personal information. We will process such requests in accordance with applicable laws

6. INTERNATIONAL DATA TRANSFERS

All information processed by us may be transferred, processed, and stored anywhere in the world, including, but not limited to, the United States or other countries, which may have data protection laws that are different from the laws where you live. We endeavor to safeguard your information consistent with the requirements of applicable laws.

7. RETENTION OF PERSONAL INFORMATION

We store the personal information we collect as described in this Privacy Notice for as long as you use our Services or as necessary to fulfill the purpose(s) for which it was collected, provide our Services, resolve disputes, establish legal defenses, conduct audits, pursue legitimate business purposes, enforce our agreements, and comply with applicable laws.

Factors determining the appropriate retention period for personal information include the amount, nature, and sensitivity of the personal information, the potential risk of harm from unauthorized use or disclosure of personal information, the purposes for which we process the personal information, whether we can achieve those purposes through other means, and the applicable legal requirements.

8. SUPPLEMENTAL NOTICE FOR EU/UK RESIDENTS

This Supplemental Notice for EU/UK GDPR only applies to our processing of personal information that is subject to the EU or UK General Data Protection Regulation.

Our processing of your personal information may be supported by one or more of the following lawful bases:

Privacy Notice Section	Lawful Basis: Performance of a Contract (i.e., to provide our Services to you)	Lawful Basis: Legitimate Interest	Lawful Basis: Consent	Lawful Basis: For Compliance with Legal Obligations
Section 3A: Provide the Services	✔	✔	✔
Section 3B: Administrative Purposes	✔	✔		✔
Section 3C: Advertising		✔	✔
Section 3D: Consent			✔
Section 3E: Other Purposes	✔	✔	✔	✔

9. CHILDREN’S INFORMATION

The Services are not directed to children under 13 (or other age as required by local law), however we may collect some information from children if you have chosen to allow your child to participate in a clinical trial.

If you are a parent or guardian and believe that your child has provided personal information to us without your consent, you may contact us as described below. If we become aware that a child has provided us with personal information in violation of applicable law, we will delete any personal information we have collected, unless we have a legal obligation to keep it.

10. OTHER PROVISIONS

Third-Party Websites/Applications. The Services may contain links to other websites/applications and other websites/applications may reference or link to our Services. These third-party services are not controlled by us. We encourage our users to read the privacy policies of each website and application with which they interact. We do not endorse, screen or approve, and are not responsible for, the privacy practices or content of such other websites or applications. Providing personal information to third-party websites or applications is at your own risk.

Supervisory Authority. If you are located in the European Economic Area, Switzerland, or the United Kingdom, you have the right to lodge a complaint with a supervisory authority if you believe our processing of your personal information violates applicable law.

Changes to our Privacy Notice. We may revise this Privacy Notice from time to time in our sole discretion. If there are any material changes to this Privacy Notice, we will notify you as required by applicable law. You understand and agree that you will be deemed to have accepted the updated Privacy Notice if you continue to use our Services after the new Privacy Notice takes effect.

11. CONTACT US

If you have any questions about our privacy practices or this Privacy Notice, or to exercise your rights as detailed in this Privacy Notice, please contact us at:

Passage Bio, Inc.

One Commerce Square

2005 Market Street, 39th Floor

Philadelphia, PA 19103

267-866-0311

info@passagebio.com

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