MySMAChecker Privacy Notice and Consent (Europe)

Scope of this Privacy Notice

Biogen MA, Inc. of 225 Binney Street, Cambridge, MA 02142, USA (“Biogen”) has developed MySMAChecker 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 rights 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. If you wish to continue, please read the following information carefully and provide your consent by ticking the relevant tick box in the app.

Information we collect and how we use it

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 first name; e-mail address; password. We will then assign you with a unique app user registration number. We require this information to: (a) create 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 technical and administrative support, where necessary.

Trackers. You can use the assessment functionality in the app to perform a motor function assessment by selecting from standard trackers that apply to your SMA condition, as well as selecting certain custom trackers. This data will be stored in the app, so you can monitor your progression over time.

SMA journal. If you use the journal feature of the app, this allows you to have a full picture of your SMA evolution and will involve your recording health information concerning your SMA (such as mood, symptoms, fitness and physical activity) as well as further personal information such as preferences and notes which may contain sensitive personal data and medical history. The journal also allows you to manage your medical appointments and can send you push notifications to remind you of those appointments, if you choose to activate this functionality. It is up to you whether you set up and use the journal and you decide what information you enter into it.

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. 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 social media private message.

Use of analytics technologies

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 personalise 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 programme.

How we share your information and international transfers

Service providers. Biogen engages service providers to assist it in the administration of its data processing activities in relation to the app (known as “processors”). These include the companies which: host the app and your personal data in the cloud and provide Biogen with data storage facilities.

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 including Biogen International GmbH, Neuhofstrasse 30, 6340 Baar, Switzerland and the local Biogen affiliate in your country. If a third party acquires all or 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 Biogen or any other person, or where necessary to exercise, establish or defend Biogen's legal rights.

Ensuring protection of your data. The transfers mentioned above may include transfers outside of your country to countries outside the European Economic Area (EEA). Biogen takes appropriate steps to ensure your data is adequately protected if transferred to such countries. For example, Switzerland is a country deemed to provide an adequate level of data protection under its data protection laws by the European Commission. Biogen otherwise has standard contractual clauses, or equivalent measures, in place where necessary to provide an adequate level of data protection. Upon your request, Biogen will provide you with a list of all recipients of your personal data and/or further information on any data transfer agreements with recipients outside the EEA.

Our security measures

We want your personal data to remain as secure as reasonably possible. We will maintain the levels of protection of your personal data in accordance with data protection laws and use all available technical resources to prevent the loss, alteration and unauthorised access or processing of your data. The security measures we use to protect all personal data are designed to meet or exceed industry standards to prevent intruders from gaining access, however you should be aware that no security measure is guaranteed to be 100% secure and you should always take appropriate security measures to protect your personal data, including ensuring that you have up-to-date antivirus software.

How we store your personal data

We will only retain your personal data for as long as it is necessary for the purpose for which that data was collected and to the extent permitted by applicable laws. When we no longer need to use your personal data, we will remove it from our systems and records and/or take steps to anonymise it so that you can no longer be identified from it (unless we need to keep your personal data to comply with legal or regulatory obligations to which we are subject).

Giving and withdrawing your consent

Because our app is designed for patients of SMA, we process your health-data from the moment you register and begin to use the app. We therefore require your explicit consent for this data processing under data protection law, as set out in detail under this Privacy Notice. You give your consent by ticking the box in the registration process. You may withdraw your consent by using the “Contact Us” feature within the app. If you withdraw your consent we will delete your account and you will no longer be able to use the app.

Your rights

You may contact Biogen at any time to exercise the following rights under data protection law:

access and receive your personal data or require information about the personal data that we hold about you;
ask us to restrict our processing of your personal data or you object to our processing;
ask for your personal data to be provided on a portable basis; and
ask us to correct or erase information we hold about you.
withdraw consent at any time

Please note that some of these rights are limited by applicable data protection law and we have the right to collect, process and hold your personal data to perform our legal obligations. You may, should you feel it necessary, lodge a complaint with your local data protection authority if you feel your privacy rights have been infringed.

Children’s Privacy

The app is not designed for use by anyone under the age of 18. We do not knowingly make the app available to, or collect personal data from, children under this age. In case we discover that a child under 18 has downloaded the app and provided us with personal data, we immediately delete this from our servers and block access to the app. If you are a parent or guardian and you are aware that your child has provided us with personal data, please contact us so that we can take the necessary action.

Changes to This Privacy Policy

We may update this Privacy Policy from time to time and if we make any material changes, we will notify you when we do so. We advise you to review this page periodically for any changes

Contact Biogen

Under data protection Law, a "controller" is the legal entity that is responsible for protecting your personal data and helping you to exercise your data protection rights. The controller responsible for your personal data is Biogen MA, Inc. and its EU data protection representative is its affiliated company Biogen GmbH of Riedenburger Str. 7, 81677 München, Germany. 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 using the “Contact Us” feature within the app. You may contact Biogen’s Data Protection Officer at privacy@biogen.com.