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Effective as of December 20, 2019
Last Updated: December 20, 2019
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
International Data Transfer
Other Sites and Services
Additional Information for European Union Users
California Privacy Rights
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:
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:
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 email@example.com.
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:
|Type of cookie||Purpose|
|Essential Cookies||These cookies are essential to provide you with services available through our Site and to enable you to use some of its features. Without these cookies, the services that you have asked for cannot be provided, and we only use these cookies to provide you with those services.|
|Functionality Cookies||These cookies allow our Site to remember choices you make when you use our Site. The purpose of these cookies is to provide you with a more personal experience and to avoid you having to re-select your preferences every time you visit our Site.|
|Analytics and Performance Cookies||These cookies are used to collect information about traffic to our Site and how users use our Site. The information gathered may include the number of visitors to our Site, the websites that referred them to our Site, the pages they visited on our Site, what time of day they visited our Site, whether they have visited our Site before, and other similar information. We use this information to help operate our Site more efficiently, to gather broad demographic information, monitor the level of activity on our Site, and improve the Site.
We use Google Analytics for this purpose. Google Analytics uses its own cookies. You can find out more information about Google Analytics cookies here and about how Google protects your data here. You can prevent the use of Google Analytics relating to your use of our Site by downloading and installing the browser plugin available here.
|Targeted and advertising cookies||These cookies track your browsing habits to enable us to show advertising which is more likely to be of interest to you. These cookies use information about your browsing history to group you with other users who have similar interests. Based on that information, third party advertisers can place cookies to enable them to show advertisements which we think will be relevant to your interests while you are on third party websites.
You can disable certain cookies which remember your browsing habits and target advertising at you by visiting this site. If you choose to remove targeted or advertising cookies, you will still see advertisements but they may not be relevant to you. Even if you do choose to remove cookies by the companies listed at the above link, not all companies that serve online behavioural advertising are included in this list, and so you may still receive some cookies and tailored adverts from companies that are not listed.
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.
If you use our websites or mobile apps, we use your personal information to:
We may use your personal information when necessary to facilitate our clinical trials, research, studies, and related activities that support product improvement, including to:
We use your personal information as necessary to provide Spark products and services, including to:
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.
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.
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.
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.
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.
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.
We may employ third party companies and individuals to perform services on our behalf, including:
Business Partners and Other Professionals and Organizations
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.
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.
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 firstname.lastname@example.org.
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 email@example.com. You may continue to receive service-related and other non-marketing emails.
If you gave us consent to post a testimonial on our Sites, but wish to update or delete it, please contact us at firstname.lastname@example.org.
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.
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.
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.
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.
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.
Spark Therapeutics, Inc.
Attention: Head of Corporate Compliance
3737 Market Street, Suite 1300
Philadelphia, PA 19104
You can contact our data protection officer through email to email@example.com.
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 firstname.lastname@example.org.
|Processing purpose||Legal basis|
|To provide our products and services||Where we have a contract governing this processing purpose, the processing is necessary is perform that contract, or necessary to take steps that you have requested prior to entering into the contract.
In other cases, these processing activities are necessary to protect your, or another person’s, vital interests.
|To perform and administer clinical trials, research and product-improvement activities||Where we have a contract governing this processing purpose, the processing is necessary is perform that contract, or necessary to take steps that you have requested prior to entering into the contract.
Where we process sensitive personal data in connection with this processing purpose, the processing is necessary for scientific or historical research purposes or statistical purposes.
In all other cases, these processing activities constitute our legitimate interests. We make sure we consider and balance any potential impact on you (both positive and negative) and your rights before we process your personal information for our legitimate interests. We do not use your personal information for activities where our interests are overridden by the impact on you (unless we have your consent or are otherwise required or permitted to by law).
|To operate our websites and mobile apps|
To communicate with you
To create anonymous data for analytics
For compliance, fraud prevention and safety
|These processing activities constitute our legitimate interests. We make sure we consider and balance any potential impact on you (both positive and negative) and your rights before we process your personal information for our legitimate interests. We do not use your personal information for activities where our interests are overridden by the impact on you (unless we have your consent or are otherwise required or permitted to by law).|
|To comply with regulatory monitoring and reporting obligations|
To comply with law
|Processing is necessary to comply with our legal obligations|
|With your consent||Processing is based on your consent. Where we rely on your consent you have the right to withdraw it anytime in the manner indicated when we requested the consent or by contacting us|
Use for new purposes
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.
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:
You can submit these requests by email to email@example.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.
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.
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.
|Categories of consumer’s Personal Information collected||Examples||Business or commercial purposes for which the information was collected||Categories of sources from which that information was collected||Categories of third parties with whom the business shares personal information|
|Identifiers||Real Name, Alias, Post Address, Email, Phone number, Signature, Unique Personal Identifier, Online Identifier, SSN.||This information is collected directly from you.||Affiliates, service providers, business partners and other professionals and organizations, and internal professional advisors.|
|Protected Classifications||Race, Age (over 40), Sex/Gender, Medical Condition (genetic characteristics, cancer, or a record or history of cancer), Disability (mental and physical including HIV/AIDS, cancer, and genetic characteristics, Genetic Information.||This information is collected directly from you.||Affiliates, service providers, business partners and other professionals and organizations, and internal professional advisors.|
|Internet or Electronic Network Activity Information||Browsing history, |
information regarding a consumer’s interaction with an Internet Web site, application, or advertisement,
internet Protocol address, device ID,
cookies, beacons, pixel tags, mobile ad Identifiers.
|We collect your internet or other electronic network activity information from your interactions with our website.||Affiliates, service providers, business partners and other professionals and organizations, and internal professional advisors.|
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.
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:
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.
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 firstname.lastname@example.org.
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.
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: