Last Updated: June 30, 2021

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.

  1.  SCOPE
  2.  PERSONAL INFORMATION WE COLLECT
  3.  HOW WE USE YOUR INFORMATION
  4.  HOW WE DISCLOSE YOUR INFORMATION
  5.  YOUR PRIVACY CHOICES AND RIGHTS
  6.  SECURITY OF YOUR INFORMATION
  7.  INTERNATIONAL DATA TRANSFERS
  8.  RETENTION OF PERSONAL INFORMATION
  9.  SUPPLEMENTAL NOTICE FOR CALIFORNIA RESIDENTS
  10.  SUPPLEMENTAL NOTICE FOR NEVADA RESIDENTS
  11.  CHILDREN’S INFORMATION
  12.  OTHER PROVISIONS
  13.  CONTACT US

1. SCOPE

This Privacy Notice applies to personal information processed by us, on our websites, in clinical trials, patient support programs and other online or offline services. To make this Privacy Notice easier to read, our websites, mobile applications, 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.

  1. 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.
  1. 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.

Our uses of these Technologies fall into the following general categories:

  • Operationally Necessary. This includes Technologies that allow you access to our Services, applications, and tools that are required to identify irregular website behavior, prevent fraudulent activity and improve security or that allow you to make use of our functionality;
  • Performance-Related. We may use Technologies to assess the performance of our Services, including as part of our analytic practices to help us understand how individuals use our Services (see Analytics below);
  • Functionality-Related. We may use Technologies that allow us to offer you enhanced functionality when accessing or using our Services. This may include identifying you when you sign into our Services or keeping track of your specified preferences, interests, or past items viewed;
  • Advertising- or Targeting-Related. We may use first party or third-party Technologies to deliver content, including ads relevant to your interests, on our Services or on third-party websites.

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

  • Analytics. We may use Technologies and other third-party tools to process analytics information on our Services, including the following:
  1. 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 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.

  1. 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 about your account, activities on our Services, and policy changes;
  • Processing applications if you apply for a job, we post on our Services; and
  • Allowing you to register for events.
  1. Administrative Purposes

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

  • Pursuing our legitimate interests such as direct marketing, research and development (including marketing 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;
  • 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;
  • 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;
  • Enforcing our agreements and policies; and
  • Complying with our legal obligations.
  1. Marketing and 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 marketing practices or if you would like to opt out of the use of your personal information for marketing purposes, you may contact us at any time as set forth below.

  1. Other Purposes

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

  • 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.
  • De-identified and Aggregated Information. We may use personal information and other information about you to create de-identified and/or aggregated information, such as de-identified demographic information, de-identified location information, information about the device from which you access our Services, or other analyses we create.

4. HOW WE DISCLOSE YOUR 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.

  1. 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, and other than pharmacovigilance data, all information we receive from the clinical trial sites and CROs are required to be de-identified.
  • 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, hosting, customer service, and related services.
  • 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.”
  • APIs/SDKs. We may use third-party Application Program Interfaces (“APIs”) and software development kits (“SDKs”) as part of the functionality of our Services. For more information about our use of APIs and SDKs, please contact us as set forth below.
  1. 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.

  1. 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. 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. SECURITY OF YOUR INFORMATION

We take steps to ensure that your information is treated securely and in accordance with this Privacy Notice. Unfortunately, no system is 100% secure, and we cannot ensure or warrant the security of any information you provide to us. We have taken appropriate safeguards to require that your personal information will remain protected and require our third-party service providers and partners to have appropriate safeguards as well. To the fullest extent permitted by applicable law, we do not accept liability for unauthorized disclosure.

By using our Services or providing personal information to us, you agree that we may communicate with you electronically regarding security, privacy, and administrative issues relating to your use of our Services. If we learn of a security system’s breach, we may attempt to notify you electronically by posting a notice on our Services, by mail or by sending an email to you.

7. 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.

8. 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. 

9. SUPPLEMENTAL NOTICE FOR CALIFORIA RESIDENTS

This Supplemental California Privacy Notice only applies to our processing of personal information that is subject to the California Consumer Privacy Act of 2018 (“CCPA”). The CCPA provides California residents with the right to know what categories of personal information Passage Bio has collected about them and whether Passage Bio disclosed that personal information for a business purpose (e.g., to a service provider) in the preceding 12 months. California residents can find this information below:

Category of Personal Information Collected by Passage Bio

Category of Third Parties Information is Disclosed to for a Business Purpose

Identifiers. 

A real name, alias, postal address, unique personal identifier, Internet Protocol address, email address, or other similar identifiers. 

  • Advertising partners
  • Service providers
  • Clinical Trial Sites
  • Clinical Research Organizations

Personal information categories listed in the California Customer Records statute (Cal. Civ. Code § 1798.80(e))

A name, signature, Social Security number, physical characteristics or description, address, telephone number, passport number, driver's license or state identification card number, insurance policy number, education, employment, employment history, medical information, or health insurance information. 

  • Service providers
  • Clinical Trial Sites
  • Clinical Research Organizations

Protected classification characteristics under California or federal law

Age (40 years or older), race, color, ancestry, national origin, citizenship, medical condition, physical or mental disability, sex (including gender, gender identity, gender expression, pregnancy or childbirth and related medical conditions), genetic information (including familial genetic information).

  • Service providers
  • Clinical Trial Sites
  • Clinical Research Organizations

Commercial information

Records of products or services purchased, obtained, or considered, or other purchasing or consuming histories or tendencies.

  • Service providers
  • Clinical Trial Sites
  • Clinical Research Organizations

Internet or other electronic network activity

Browsing history, search history, information on a consumer's interaction with an internet website, application, or advertisement.

  • Advertising partners
  • Service providers

 

Professional or employment-related information

Current or past job history.

  • Service providers
  • Clinical Trial Sites
  • Clinical Research Organizations

The categories of sources from which we collect personal information and our business and commercial purposes for using personal information are set forth in “Personal Information We Collect” and “How We Use Your Personal Information” above, respectively.

“Sales” of Personal Information under the CCPA

For purposes of the CCPA, Passage Bio does not “sell” personal information, nor do we have actual knowledge of any “sale” of personal information of minors under 16 years of age.

Additional Privacy Rights for California Residents

Non-Discrimination. California residents have the right not to receive discriminatory treatment by us for the exercise of their rights conferred by the CCPA.

Authorized Agent. Only you, or someone legally authorized to act on your behalf, may make a verifiable consumer request related to your personal information. You may also make a verifiable consumer request on behalf of your minor child. To designate an authorized agent, please contact us as set forth in “Contact Us” below and provide written authorization signed by you and your designated agent.

Verification. To protect your privacy, we will take steps the following steps to verify your identity before fulfilling your request. When you make a request, we will ask you to provide sufficient information that allows us to reasonably verify you are the person about whom we collected personal information or an authorized representative, which may include asking you to answer questions regarding your account and use of our Services.

If you are a California resident and would like to exercise any of your rights under the CCPA, please contact us as set forth in “Contact Us” below. We will process such requests in accordance with applicable laws.

Accessibility. This Privacy Notice uses industry-standard technologies and was developed in line with the World Wide Web Consortium’s Web Content Accessibility Guidelines, version 2.1. If you wish to print this policy, please do so from your web browser or by saving the page as a PDF.

10. SUPPLEMENTAL NOTICE FOR NEVADA RESIDENTS

If you are a resident of Nevada, you have the right to opt-out of the sale of certain Personal Information to third parties who intend to license or sell that Personal Information. You can exercise this right by contacting us at [email protected] with the subject line “Nevada Do Not Sell Request” and providing us with your name and the email address associated with your account. Please note that we do not currently sell your Personal Information as sales are defined in Nevada Revised Statutes Chapter 603A. If you have any questions, please contact us as set forth below.

11. 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 your child participates in a clinical trial. We take additional steps to obtain the parent or guardian’s verifiable consent before collecting any information from a child.

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.

12. 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, the United Kingdom or Brazil, 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.

13. 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

[email protected]

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