Last modified: December 5, 2016
Sarepta Therapeutics, Inc. ("Sarepta", "Company" or "We") respects your privacy and is committed to protecting it through our compliance with this policy. This policy describes the types of information we may collect from you or that you may provide when you visit www.sarepta.com, http://www.duchenne.com/ or any social media site, mobile sites, or online application owned and/or operated by the Company, including any content, functionality and services offered on or through these sites or channels (our "Websites") and our practices for collecting, using, maintaining, protecting and disclosing that information.
This policy applies to personal (i.e., individually identifiable) and other information we may collect:
- On our Websites.
- Through e-mail, text and other electronic messages between you and our Websites.
- Through mobile and desktop applications downloaded from our Websites, which may provide dedicated non-browser-based interaction between you and our Websites.
- When you interact with our advertising and applications on third-party websites and services, if those applications or advertising include links to this policy.
This policy does not apply to information collected by:
- us offline or through any other means not included in the above-provided definition of our Websites; or
- any third party, including through any application or content (including advertising) that may link to or be accessible from or on the Website
CHILDREN UNDER THE AGE OF 13
No one under age 13 may provide information on our Websites. Our Websites are not directed at children under 13. If you are under 13, and would like to access our Websites and the information and services we provide, please consult your parent or guardian and ask him or her to register or use our Website features on your behalf. If you believe we have any information from or about a child under 13 without parental or guardian consent, please contact us at firstname.lastname@example.org so that we may identify and delete that information.
INFORMATION WE COLLECT ABOUT YOU AND HOW WE COLLECT IT
We collect several types of information from and about users of our Websites, including:
- information by which you may be personally identified, such as name, postal address, email address or telephone number ("personal information");
- information that is about you but individually does not identify you, such as what classifications you fit into (e.g. patient, caregiver, healthcare provider, investor, media, etc.) and medical information (e.g. diagnosis, genetic mutation information);
- records and copies of correspondence between you and Sarepta
- data about your internet connection (including your IP address, operating system and browser type), your search queries on our Websites, the equipment you use to access our Websites and other Website usage details (including traffic data, location data, logs and other communication data and the resources that you access and use on our Websites).
- Your responses to surveys that we might ask you to complete for research purposes related to our business.
- You also may provide information to be used, published or displayed (hereinafter, "posted") on public areas of our Websites, or to be transmitted to other users of our Websites (collectively, "User-Generated Information"). When You provide User-Generated Information, you do so at your own risk. Although in some cases you may be able to establish certain privacy settings for your User-Generated Information that is posted on our Websites, please be aware that no security measures are perfect or impenetrable. Additionally, we cannot control the actions of other users of our Websites with whom you may choose to share your User-Generated Information. Therefore, we cannot and do not guarantee that your User-Generated Information will not be viewed by unauthorized persons.
We collect information about you:
- Directly from you when you post it on any of our Websites or otherwise provide it to us via our Websites, (e.g., by completing online forms on our Websites (e.g., registration forms on our Websites for our services)), or by mail, email, fax, or phone.
- Automatically as you navigate through our Websites through cookies and other tracking technologies described below.
- From third parties such as our business partners and agents.
Information Collected Automatically
The information about you that we collect automatically does not identify you personally, but rather only by reference to the device you use to access our Websites. This information tells us about your usage of our Websites, which helps us to improve our Websites and to deliver a better and more personalized service to you. By enabling us to take into account your Website usage patterns and preferences, this information helps us to customize our Websites according to your individual interests, to speed up your searches, and to recognize you when you return to our Websites.
The technologies we use for this automatic data collection may include:
- Web Beacons. Pages of our Websites and our emails may contain small electronic files known as web beacons (also referred to as clear gifs, pixel tags and single-pixel gifs) that permit the Company, for example, to count users who have visited those pages or opened an email and for other related website statistics (for example, recording the popularity of certain website content and verifying system and server integrity).
Although the information we collect automatically does not personally identify you, we may link that information to information that does personally identify you that we otherwise collect as described in this policy.
We do not control these third parties' tracking technologies or how they may be used. If you have any questions about an advertisement or other targeted content, you should contact the responsible advertiser or content provider directly.
HOW WE USE YOUR INFORMATION
We use information that we collect about you or that you provide to us, including any personal information:
- To respond to your inquiries for information, and to provide you with information about Sarepta and its products and services, by email, regular mail, text message or phone according to your preferences.
- To present our Websites and their contents to you according to your preferences.
- To develop statistics and analysis to improve and further develop our Websites and the information and services we may offer from time to time.
- To request your participation in Sarepta surveys and other market research which can include requests for demographic, geographic or other personal information as well as questions regarding a patient’s medical condition and other data which Sarepta may use to create useful services and information for users of our Websites and for other lawful business purposes.
- To fulfill any other purpose for which you provide it.
- To provide you with notices
- To carry out our obligations and enforce our rights arising from any contracts entered into between you and us, including for billing and collection.
- To notify you about changes to our Website or any products or services we offer or provide though it.
- To allow you to participate in interactive features on our Websites.
- In any other way we may describe when you provide the information.
- For any other purpose with your consent.
Some of our Websites or forms in which we collect information from you, will have an “Opt-In” option for you to allow Sarepta and companies working on its behalf to communicate with you regarding information and services that may be available to you. If you register for one of our Websites, we may provide you with information or services consistent with the information you provide. For example, if you identify yourself as a parent of a child with Duchenne muscular dystrophy (DMD), we may ask you to provide medical information such as the genetic mutation responsible for your child’s disorder. We will use this and other information you may provide to offer you relevant information about DMD, opportunities to participate in clinical trials, products and services, or other information.
DISCLOSURE OF YOUR INFORMATION
Sarepta does not share personally identifiable information with any unaffiliated third party for such third party’s own marketing purposes. We may disclose aggregated information about our users, and other information that does not identify any individual user, without restriction.
- To contractors, service providers and other third parties we use to support our business and who are bound by contractual obligations to keep personal information confidential and use it only for the purposes for which we disclose it to them.
- To a buyer or other successor in the event of a merger, divestiture, restructuring, reorganization, dissolution or other sale or transfer of some or all of Sarepta’s assets, whether as a going concern or as part of bankruptcy, liquidation or similar proceeding, in which personal information held by Sarepta about users of our Websites is among the assets transferred.
- To fulfill the purpose for which you provide it. (For example, if you give us an email address to send information about a DMD diagnosis, we will use that email address to provide such information to you.)
- With your consent and/or for any other purpose disclosed by us when you provide the information.
We may also disclose your personal information:
- To comply with any court order, law or legal process, including to respond to any government or regulatory request.
- If we believe disclosure is necessary or appropriate to protect the rights, property, or safety of Sarepta, users of our Websites or others.
CHOICES ABOUT HOW WE USE AND DISCLOSE YOUR INFORMATION
We strive to provide you with reasonable choices regarding the our collection and use of information about you. For example, you may: (1) choose not to provide personal information on our Websites, (2) set your browser preferences and use web tools available to block the cookies sent in connection with your use of our Websites, (3) follow the instructions to unsubscribe from our services included on our Websites and the communications sent to you, and/or (4) email a request to unsubscribe from our services to email@example.com.
ACCESSING AND CORRECTING YOUR INFORMATION
You may send us an e-mail at firstname.lastname@example.org to request access to or the correction or deletion of any personal information that you have provided to us. We may not accommodate a request to change information for several reasons, inclu
EXONDYS 51 (eteplirsen) is indicated for the treatment of Duchenne muscular dystrophy (DMD) in patients who have a confirmed mutation of the DMD gene that is amenable to exon 51 skipping. This indication is approved under accelerated approval based on an increase in dystrophin in skeletal muscle observed in some patients treated with EXONDYS 51. Continued approval for this indication may be contingent upon verification of a clinical benefit in confirmatory trials.
IMPORTANT SAFETY INFORMATION
Hypersensitivity reactions, including rash and urticaria, pyrexia, flushing, cough, dyspnea, bronchospasm, and hypotension, have occurred in patients who were treated with EXONDYS 51. If a hypersensitivity reaction occurs, institute appropriate medical treatment and consider slowing the infusion or interrupting the EXONDYS 51 therapy.