Biogen, Inc. of 225 Binney Street, Cambridge, MA 02142, USA (“Biogen”) has developed SMAbility (the “App”), an SMA Patient App to provide support to individuals living with Spinal Muscular Atrophy (SMA).
This privacy notice describes what “personal data” (meaning any information relating to an identified or identifiable natural person) we need to collect from you in the app, how we use it and why, and your choices in relation to this collection and use.
You are under no obligation to provide personal data to us, but should you decide not to, you will not be able to use the app as it requires certain basic personal data to function, as described below. Please read the following information carefully.
The app will collect certain personal data automatically, including but not limited to: (i) the type of mobile device that you use, (ii) the unique device identification number of your mobile device, (iii) your mobile device’s IP address, (iv) the type of operating system running in your mobile device, (v) the type of internet browser that you utilize, and (vi) information about your usage of the Mobile Apps.
We will retain your personal data for as long as you use the Services and until you ask for your information to be deleted. We will also retain and use your information as necessary to comply with legal, regulatory, and contractual obligations applicable to our operations, to resolve disputes, and to enforce our agreements. For example, regulations may require us to retain healthcare-related information for a specified period of time or if we are holding information on behalf of the healthcare organization where you receive services, then we may be required to comply with that organization’s information retention requirements.
The different features of the app collect different types of personal data depending on your use of these features.
App registration. If you choose to use the app, you will need to create an account and user profile within the app. We will collect the following necessary personal data from you to do this: your name; e-mail address; password; country in which you live; the date you registered to use the app; and topics of interest to you regarding SMA. We will then assign you with a unique app user registration number. We require this information to: (a) create, validate and manage your account; (b) tailor your user experience and provide you with information that matches your personal profile and preferences; and (c) provide you with local technical and administrative support, where necessary.
SMA metric tracking. If you use the App, it will involve your recording health information concerning your SMA (such as mood, symptoms, fitness and physical activity). The App can also send you push notifications to remind you of tracking certain activities via the app or integrated voice assistants, if you chose to activate this functionality. It is up to you whether you set up and use the tracking and you decide what information you enter.
Reports. The app allows you to generate reports based on your journal that can be shared, e.g. with your doctor. This feature allows you to select the information that is provided in your report as well as the date range for that information. Your report will be generated in PDF format and can be shared outside of the app, by whichever means you decide, using the methods made available to you by your device, e.g. e-mail, text message or WhatsApp message.
Marketing materials. Biogen, and companies working with Biogen, may use your personal data to send you direct marketing communications (including treatment information, insights about SMA, clinical trial information, patient education materials and invitations to participate in market research surveys) by mail, email, fax, telephone call, and text message (including auto-dial and pre-recorded calls and messages) or otherwise provide you with information about Biogen products, services, and programs or other topics of interest, conduct market research, or otherwise ask you about your experience with or thoughts about such topics. I understand and agree that any information that I provide may be used by Biogen to help develop new products, services, and programs. You may unsubscribe from receiving such communications at any time and you may also manage your preferences in the app.
Data Collection Technologies and online advertising. If you choose to use the various features of the app mentioned above, we may automatically collect the following personal data from you to assess how you are using the app, where this is permitted by your device settings:
(a) technical information, including your IP address, your login information, browser type and version, device identifier, location and time zone setting, browser plug-in types and versions, operating system and platform, page response times and download errors; and
(b) information about your visit, including what features of the app you use and how frequently you use them.
This Data Collection Technology allows us to personalize your experience, to enhance this app and your experience when you use it, and to send you push notifications if you have selected to receive them. We work with partners who provide us with analytics and manage our online advertising program. Biogen and our service providers may use the technologies to track the actions of users of the app, to measure statistics of our marketing efforts, and to deliver advertisements on third party websites. Cookies and similar technologies may be used to collect this information, such as your interactions with the app.
Biogen supports the Self-Regulatory Principles for Online Behavioral Advertising of the Digital Advertising Alliance (“Principles”). This means that we allow you to exercise choice regarding the collection of information about your online activities over time and across third-party websites for online interest based advertising purposes. More information about these Principles can be found at www.aboutads.info/.
If you want to “opt out” of receiving online interest-based advertisements, please follow the instructions at www.aboutads.info/choices, or http://www.networkadvertising.org/choices/. An “opt-out” Cookie will be placed on your device indicating that you do not want to receive interest-based advertisements. If you delete Cookies on your device generally, you will need to opt-out again.
Please note that when you “opt-out” of receiving interest-based advertisements, this does not mean you will no longer see advertisements from us. It means that the online ads that you do see will not be based on your interests. When you “opt-out” of receiving interest-based advertisements through one of the links above, these Data Collection Technologies may still collect information about your use of the Websites, including for analytics.
Service providers. Biogen engages service providers to assist it in the administration of its data processing activities in relation to the app and as further described in this Privacy Notice. These include the companies which: (a) provide the technology solution for the app; (b) host the app and your personal data in the cloud and provide Biogen with data storage facilities; and (c) provide services to Biogen as further described in this Privacy Notice.
Other Biogen companies. Biogen may also share your personal data with other companies in the Biogen group for the purposes described in this Privacy Notice. If a third party acquires all or a material part of Biogen's business or assets, then your personal data may be disclosed in connection with that sale.
Pharmacovigilance and regulatory requirements. Biogen is obliged by law to comply with regulatory requirements applicable to it as a pharmaceutical company, including the reporting of adverse reactions to its products to monitor the safety of all medicines that we market (also known as our pharmacovigilance or adverse event reporting obligations). Biogen may collect, use and disclose your personal data to other members of the Biogen group and other third parties where it considers this necessary for compliance with applicable laws, to protect the vital interests of any person, or where necessary to exercise, establish or defend Biogen's legal rights.
We retain your personal data as long as your account remains active and you may deactivate your account at any time. Your account may be deactivated automatically if you have not used the app for more than 12 months. Before your information is deleted, Biogen will contact you to ask you if you wish your account to remain active. We will also retain your information for as long as is necessary for us to comply with our legal obligations and best practice for a responsible pharmaceutical company. Please note that we have the right to collect, process and hold your personal data to perform our legal obligations.
If you are a California resident, California law may provide you with additional rights regarding our use of your personal information. To learn more about your California privacy rights, click here.
If, at any time, you have questions or concerns about this Privacy Notice or the processing of your personal data, you can contact Biogen by sending an e-mail to privacy@biogen.com or by using the “Contact Us” feature within the app. If you choose to use this feature, the app will access the mail application on your device so that you may send us an e-mail.
Version Date: January 04, 2022