Privacy Policy

Effective as of December 20, 2019

Last Updated: December 20, 2019

This “Privacy Policy” describes the privacy practices of Spark Therapeutics, Inc. and our subsidiaries and affiliates, including but not limited to the entities listed here (collectively, “Spark”, “we”, “us”, or “our”). This Privacy Policy describes how we collect, use, disclose and otherwise process personal information, and explains the rights and choices available to individuals with respect to their information.

Spark may provide additional privacy notices to individuals at the time we collect their data. For example, we provide a specific privacy notice to clinical trial participants that describe our privacy practices in connection with conducting clinical trials. This type of an “in-time” notice will govern how we may process the information you provide at that time.

Individuals located in the European Union should be sure to read the important information provided here.

Personal Information We Collect
Cookies and Similar Technologies
How We Use Your Personal Information
How We Share your Personal Information
Additional Program Terms
Your Choices
Security
Children
International Data Transfer
Other Sites and Services
Changes to this Privacy Policy
Contact Us
Additional Information for European Union Users
California Privacy Rights

Personal Information We Collect

Whose Personal Information We Collect

We collect personal information about the following types of individuals: clinical trial participants, patients, patient family members, caregivers or advocates, physicians and other healthcare professionals, clinical trial investigators, researchers, pharmacists, and other individuals who interact directly with Spark or its service providers or business partners, including users of websites and mobile applications.

How We Collect Personal Information

We collect personal information:

• • Directly from individuals
  • Through our websites and mobile apps
  • From healthcare professionals
  • From contract research organizations and clinical trial investigators
  • From government agencies or public records
  • From third party service providers, data brokers or business partners

• From industry and patient groups and associations
• From social media or other public forums (including adverse event information or product quality complaints)

Types of Personal Information We Collect

The types of personal information we collect and share depend on the nature of the relationship you have with Spark and the requirements of applicable laws. We may collect:

• Health and medical information (such as medical insurance details, information about physical and mental health conditions and diagnoses, treatments for medical conditions, genetic information, family medical history, and medications an individual may take, including the dosage, timing, and frequency) we collect in connection with managing clinical trials, conducting research, providing patient support programs, managing compassionate use and expanded access programs, and tracking adverse event reports
• Personal and business contact information and preferences (such as name, job title and employer name, email address, mailing address, phone number, and emergency contact information)
• Biographical and demographic information (such as date of birth, age, gender, marital status, and information regarding any parents or legal guardians)
• Professional credentials, educational and professional history, and institutional affiliations
• Payment-related information we need to pay for professional services, such as consulting, that individuals may provide to us (such as tax identification number and financial account information)
• If you are a healthcare professional, we collect information about the programs and activities in which you have participated, your prescribing of our products and the agreements you have executed with us
• Your photograph, social media handle or digital or electronic signature
• Publicly available information (such as comments describing support for and experience with Spark products)
• Other information you provide to us (such as in emails, on phone calls, in market research surveys, or in other correspondence with Spark or its service providers or business partners)

We may combine other publicly available information, such as information related to the organization for which you work, with the personal information that you provide to us through our Services.

Information automatically collected

We may automatically log information about you and your computer or mobile device when you access our Sites. For example, we may log your computer or mobile device operating system name and version, manufacturer and model, browser type, browser language, screen resolution, the website you visited before browsing to our Sites, pages you viewed, how long you spent on a page, access times and information about your use of and actions on our Sites. We collect this information about you using cookies. Please refer to the Cookies and Similar Technologies section for more details.

Changes to your personal information

It is important that the personal information we hold about you is accurate and current. Please let us know if your personal information changes during your relationship with us by emailing us at info@sparktx.com.

Cookies and Similar Technologies

What are cookies?

We may collect information using “cookies.” Cookies are small data files stored on the hard drive of your computer or mobile device by a website. We may use both session cookies (which expire once you close your web browser) and persistent cookies (which stay on your computer or mobile device until you delete them) to provide you with a more personal and interactive experience on our Site.

We use two broad categories of cookies: (1) first party cookies, served directly by us to your computer or mobile device, which we use to recognize your computer or mobile device when it revisits our Site; and (2) third party cookies, which are served by service providers on our Site, and can be used by such service providers to recognise your computer or mobile device when it visits other websites.

Cookies we use

Our Site uses the following types of cookies for the purposes set out below:

Disabling cookies

You can typically remove or reject cookies via your browser settings. In order to do this, follow the instructions provided by your browser (usually located within the “settings,” “help” “tools” or “edit” facility). Many browsers are set to accept cookies until you change your settings.

Further information about cookies, including how to see what cookies have been set on your computer or mobile device and how to manage and delete them, visit www.allaboutcookies.org.

If you do not accept our cookies, you may experience some inconvenience in your use of our Site. For example, we may not be able to recognize your computer or mobile device and you may need to log in every time you visit our Site.

Do Not Track Signals

Some Internet browsers may be configured to send “Do Not Track” signals to the online services that you visit. We currently do not currently respond to do not track signals. To find out more about “Do Not Track,” please visit http://www.allaboutdnt.com.

How We Use Your Personal Information

To operate our websites and mobile apps

If you use our websites or mobile apps, we use your personal information to:

• Operate, maintain, administer and improve the websites and mobile apps
• Better understand your needs and interests, and personalize your experience with the websites and mobile apps
• Provide support and maintenance for our websites and mobile apps
• Respond to your service-related requests, questions and feedback

To perform and administer clinical trials, research and product-improvement activities

We may use your personal information when necessary to facilitate our clinical trials, research, studies, and related activities that support product improvement, including to:

• Staff and manage clinical trials, including by recruiting investigators and participants
• Track and respond to safety and product quality concerns (including product recalls)
• Support public health initiatives, symposia, conferences, and scientific, educational and volunteer events
• Define and manage appropriate patient engagement activities, and patient support programs (including to provide co-pay and other financial assistance where available)
• Identify and engage thought leaders and external experts
• Award scholarships and grants
• Attribute authorship to academic and promotional materials

To provide our products and services

We use your personal information as necessary to provide Spark products and services, including to:

• Manage access to our products, including where access is limited by law to licensed physicians
• Pay for services that physicians, researchers and other individuals may provide to us

To communicate with you

If you request information from us or participate in our surveys, promotions or events, we may send you Spark-related marketing communications as permitted by law. We may also use your personal information to engage in direct marketing activities as permitted by law. You will have the ability to opt out of such communications.

To comply with law

We use your personal information as we believe necessary or appropriate to comply with applicable laws, lawful requests and legal process, such as to respond to subpoenas or requests from government authorities.

To comply with regulatory monitoring and reporting obligations

We use your personal information as we believe necessary or appropriate to comply with regulatory monitoring and reporting obligations, such as those related to adverse events, product complaints, patient safety, and financial disclosures.

With your consent

We will request your consent to use your personal data where required by law, such as where we use certain cookies or similar technologies or would like to send you certain marketing messages. If we request your consent to use your personal data, you have the right to withdraw your consent any time in the manner indicated when we requested the consent or by contacting us.

To create anonymous data for analytics

We may create anonymous data from your personal information and other individuals whose personal information we collect. We make personal information into anonymous data by excluding information that makes the data personally identifiable to you, and use that anonymous data for our lawful business purposes.

For compliance, fraud prevention and safety

We use your personal information as we believe necessary or appropriate to (a) enforce the terms and conditions that govern our websites, mobile apps, products and services; (b) protect our rights, privacy, safety or property, and/or that of you or others; and (c) protect, investigate and deter against fraudulent, harmful, unauthorized, unethical or illegal activity.

How We Share your Personal Information

Affiliates

We may disclose your personal information to our subsidiaries and corporate affiliates for purposes consistent with this Privacy Policy.

Service Providers

We may employ third party companies and individuals to perform services on our behalf, including:

• Contract research organizations that conduct clinical trials
• Data storage and analytics
• Customer service (including our medical information line) and patient support providers (including for product quality and adverse event reporting, patient co-pay assistance, medicine intake adherence programs, etc.)
• Product recall administration
• Technology services and support (including email and web hosting providers, marketing and advertising technology providers, email and text communications providers, mobile app developers)
• Event planning and travel organizations that help facilitate Spark programs
• Payment, shipping and fulfillment service providers

These third parties may use your information only as directed by Spark and in a manner consistent with this Privacy Policy, and are prohibited from using or disclosing your information for any other purpose.

Business Partners and Other Professionals and Organizations

We may disclose your personal information to partners with whom we jointly develop products or services, in connection with the development and promotion of such products or services. We will ask for your consent before disclosing your information with our business partners where required by applicable law. We may also share your personal information with healthcare professionals, researchers, academics, public health organizations, and publishers for purposes consistent with this Privacy Policy.

Internal Professional Advisors

We may disclose your personal information to professional advisors, such as lawyers, bankers, auditors and insurers, where necessary in the course of the professional services that they render to us.

Compliance with Laws and Law Enforcement; Protection and Safety

We may disclose information about you to government or law enforcement officials or private parties as required by law, and disclose and use such information as we believe necessary or appropriate to (a) comply with applicable laws and lawful requests and legal process, such as to respond to subpoenas or requests from government authorities; (b) enforce the terms and conditions that govern our websites, mobile apps, products and services; (d) protect our rights, privacy, safety or property, and/or that of you or others; and (e) protect, investigate and deter against fraudulent, harmful, unauthorized, unethical or illegal activity.

Business Transfers

We may sell, transfer or otherwise share some or all of its business or assets, including your personal information, in connection with a business deal (or potential business deal) such as a merger, consolidation, acquisition, reorganization or sale of assets or in the event of bankruptcy, in which case we will make reasonable efforts to require the recipient to honor this Privacy Policy.

Additional Program Terms

In some situations, we may have a separate agreement or relationship with you with respect to a specific type of processing of your data, such as if you participate in a special program, activity, event, or clinical trial.  These situations will be governed by specific terms, privacy notices, or consent forms that provide additional information about how we will use your information.  We will honor these additional terms with respect to your information and thus, strongly recommend you review the additional terms prior to participating in any programs.

Your Choices

Access, Review, Update Your Information

If you become aware that the personal information we maintain about you is inaccurate, incomplete, misleading, irrelevant or out of date, or if you would like to access or review your information, you may contact us at info@spartx.com.

Marketing communications

You may opt out of marketing-related emails by clicking the “Unsubscribe” link at the bottom of each such email, or by sending an email with the subject line “Unsubscribe” to info@sparktx.com. You may continue to receive service-related and other non-marketing emails.

Testimonials

If you gave us consent to post a testimonial on our Sites, but wish to update or delete it, please contact us at info@sparktx.com.

Choosing not to share your personal information

Where we are required by law to collect your personal information, or where we need your personal information in order to provide you with our products or services, if you do not provide this information when requested (or you later ask to delete it), we may not be able to provide you with our products or services and may need to terminate our relationship with you. We will tell you what information you must provide to us by designating it as required when we request the information or through other appropriate means.

Security

The security of your personal information important to us. We take a number of organizational, technical and physical measures designed to protect the personal information we collect, both during transmission and once we receive it. However, no security safeguards are 100% secure and we cannot guarantee the security of your information.

Children

We do not knowingly collect personal information from children under age 13 in the United States through our websites or mobile applications. If we learn that we have collected personal information directly from a child under the age of 13 through our websites or mobile applications, we will delete that information.

International Data Transfers

Spark is headquartered in the United States and has affiliates and service providers in other countries, and your personal information may be transferred to the United States or other locations outside of your state, province, country or other governmental jurisdiction where privacy laws may not be as protective as those in your jurisdiction.

Individuals in the European Union should read the important information provided here about transfer of personal information outside of the European Economic Area.

Other Sites and Services

For your convenience and information, we may provide links to websites and other third-party content that is not owned or operated by Spark. These links are not an endorsement, authorization or representation that we are affiliated with that third party. We do not exercise control over third party websites or services, and are not responsible for their actions. Other websites and services follow different rules regarding the use or disclosure of the personal information you submit to them. We encourage you to read the privacy policies of the other websites you visit and services you use.

Changes to this Privacy Policy

We reserve the right to modify this Privacy Policy at any time. We encourage you to periodically review this page for the latest information on our privacy practices. If we make material changes to this Privacy Policy you will be notified via email (if we have your email address) or another manner that we believe reasonably likely to reach you (which may include posting a new privacy policy on our websites, or a specific announcement on this page).

Any modifications to this Privacy Policy will be effective upon our posting of the new terms and/or upon implementation of the changes (or as otherwise indicated at the time of posting). In all cases, your continued use of our websites, mobile apps, products and services after the posting of any modified Privacy Policy indicates your acceptance of the terms of the modified Privacy Policy.

Contact Us

If you have any questions or concerns at all about our Privacy Policy, please contact us at:

Spark Therapeutics, Inc.
Attention: Head of Corporate Compliance
3737 Market Street, Suite 1300
Philadelphia, PA 19104
info@sparktx.com

You can contact our data protection officer through email to info@sparktx.com.

Additional Information for European Union Users

Personal information

References to “personal information” in this Privacy Policy are equivalent to “personal data” governed by European data protection legislation.

Controller and Data Protection Officer

Spark Therapeutics, Inc. is the controller of your personal information for purposes of European data protection legislation. See the Contact Us section above for contact details.

Legal bases for processing

We only use your personal information as permitted by law. We are required to inform you of the legal bases of our processing of your personal information, which are described in the table below. If you have questions about the legal basis of how we process your personal information, contact us at info@sparktx.com.

Use for new purposes

We may use your personal information for reasons not described in this Privacy Policy where permitted by law and the reason is compatible with the purpose for which we collected it. If we need to use your personal information for an unrelated purpose, we will notify you and explain the applicable legal basis.

Retention

We will only retain your personal information for as long as necessary to fulfil the purposes we collected it for, including for the purposes of satisfying any legal, accounting, or reporting requirements.

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

In some circumstances we may anonymize your personal information (so that it can no longer be associated with you) in which case we may use this information indefinitely without further notice to you.

Your rights

European data protection laws give you certain rights regarding your personal information. You may ask us to take the following actions in relation to your personal information that we hold:

• Opt-out. Stop sending you direct marketing communications. You may continue to receive service-related and other non-marketing emails.
• Access. Provide you with information about our processing of your personal information and give you access to your personal information.
• Correct. Update or correct inaccuracies in your personal information.
• Delete. Delete your personal information.
• Transfer. Transfer a machine-readable copy of your personal information to you or a third party of your choice.
• Restrict. Restrict the processing of your personal information.
• Object. Object to our reliance on our legitimate interests as the basis of our processing of your personal information.

You can submit these requests by email to info@sparktx.com or our postal address provided above. We may request specific information from you to help us confirm your identity and process your request. Applicable law may require or permit us to decline your request. If we decline your request, we will tell you why, subject to legal restrictions. If you would like to submit a complaint about our use of your personal information or response to your requests regarding your personal information, you may contact us as described above or submit a complaint to the data protection regulator in your jurisdiction. You can find your data protection regulator here.

Cross-Border Data Transfer

Whenever we transfer your personal information out of the EEA to countries not deemed by the European Commission to provide an adequate level of personal information protection, the transfer will be based on safeguards that allow us to conduct the transfer in accordance with the EEA’s data protection laws, such as the specific contracts approved by the European Commission as providing adequate protection of personal information, which are available here. For details, see the European Commission’s website for model contracts for the transfer of personal information to third countries.

Please contact us for further information on the specific mechanism used by us when transferring your personal information out of the EEA.

California Privacy Rights

If you are a California Consumer, you have certain rights with respect to the collection, use, transfer, and processing of your “Personal Information”, as defined by the California Consumer Privacy Act (CCPA). We reserve the right to limit these rights where permitted under applicable law, including where your identity cannot be reasonably verified or to the extent your rights adversely affect the rights and freedoms of others. To exercise any of the rights below, please contact us via the contact information below. Only you or a person registered with the California Secretary of State that you authorize to act on your behalf, may make a verifiable consumer request related to your personal information.

Collection of Personal Information

When California Consumers access the Spark websites, use Spark services, or contact Spark, we may collect the following Personal Information.

In the preceding 12 months, we have not sold Personal Information about consumers.

In the preceding 12 months, we have not sold Personal Information about minors.

Individual Rights

Right to Know About Personal Information Collected, Disclosed, or Sold

You have the right to request that Spark disclose the Personal Information it collects, uses, and discloses about you to third parties. There are two types of Right to Know requests you can make:

1. Right to Know (Abbreviated Request): If you make a Right to Know (Abbreviated Request), you will receive the following information about you:
   1. Category of personal information collected,
   2. Categories of sources from which that information was collected,
   3. The business or commercial purpose(s) for which the information was collected,
   4. The categories of third parties to whom Spark sold or disclosed the category of personal information for a business purpose, and
   5. The business or commercial purpose for which Spark sold or disclosed the category of personal information.
2. Right to Know (Specific Pieces of Information Request): If you make a Right to Know (Specific Pieces of Information Request), you will receive the following information about you:
   1. Specific pieces of Personal Information collected about you.

Spark does not sell any Personal Information of California consumers. This information will be provided to you free of charge, unless Spark determines that your request is manifestly unfounded or excessive. You may request this information twice in a 12-month period.

Right of Deletion

You have the right to request that Spark and our service providers delete any Personal Information about yourself that Spark has collected from you upon receipt of a verifiable request. This right is subject to exceptions.

Submitting Requests

You can submit your request by calling us at +1 215-220-9300. You may also submit a request through a webform available by emailing us at info@sparktx.com.

Verifying Requests

Spark provides California Consumers with the ability to submit requests through our request website, our telephone number, and our email address. Spark must verify that the person requesting information or deletion is the California Consumer about whom the request relates in order to process the request. To verify a California Consumer’s identity, we may request up to up to three pieces of Personal Information about you when you make a request to compare against our records. We cannot respond to your request or provide you with Personal Information if we cannot verify your identity. Making a verifiable consumer request does not require you to create an account with us. We will only use Personal Information provided in your request to verify your identity and will delete any information you provide after processing the request. Spark reserves the right to take additional steps as necessary to verify the identity of California Consumers where we have reason to believe a request is fraudulent.

Authorized Agent

You may choose a person registered with the California Secretary of State that you authorize to act on your behalf to submit your requests (“Authorized Agent”). If you choose to use an Authorized Agent, Spark requires that you provide the Authorized Agent with written permission to allow them to submit your request and that you verify your identity directly with Spark. Failure to do so may result in Spark denying your request.

Right to Equal Service

Spark will not discriminate against you because you exercised any of your rights, including, but not limited to, by:

• Denying goods or services to you.
• Charging different prices or rates for goods or services, including through the use of discounts or other benefits or imposing penalties.
• Providing a different level or quality of goods or services to you.
• Suggesting that you will receive a different price or rate for goods or services or a different level or quality of goods or services.