PRIVACY NOTICE
Effective Date. This Privacy Notice ("Notice") is effective as of Jan 1, 2024.
This information is meant to explain to you how Roche PPMI Digital app collects data and how it is used for which purposes.
The study sponsor, The Michael J Fox Foundation for Parkinson's Research (MJFF), and F. Hoffmann-La Roche Ltd, Grenzacherstrasse 124, CH-4070 Basel, Switzerland, email: [email protected] ("Roche") are acting as independent data controllers.
In the event that your personal data is covered by the EU General Data Protection Regulation (EU) 2016/679 ("GDPR"): EU representative of F. Hoffmann-La Roche Ltd is Roche Privacy GmbH, Emil-Barell-Str. 1, D-79639 Grenzach-Wyhlen, [email protected].
In the event that your data is covered by the UK GDPR: the UK representative is Roche Products Limited, 6 Falcon Way, Shire Park, Welwyn Garden City, Hertfordshire AL7 1TW, United Kingdom.
For United States ("US") residents, the US Supplemental Privacy Notice provides the appropriate channels for contacting Roche with questions, requests, and inquiries in the scope of US state privacy laws.
Your study data will be used and shared for the purposes of the study and for research, to advance science and public health, or for analysis, development, testing, and commercialization of products that treat or diagnose disease, to potentially provide new insights into subject functioning and behavior or improve participant care. This processing is performed pursuant to your explicit consent or legitimate interest in accordance with the information provided in the informed consent form.
The results from exploratory biomarker tests will not be shared with you or your doctor, unless required by law. Information from these tests will not be part of your medical record.
We collect the data from the mobile application. This application collects continuous movement data (e.g., accelerometer), application usage, technical information about the smartphone for security and troubleshooting (e.g. battery life, application crash logs), PPMI ID. In addition, touch data (during selected active tests only), and audio data (during selected active tests only, and only when clearly indicated) are collected. Audio data will be used to extract outcome measures for the corresponding tasks. No video or personal information (e.g. written names, phone number) or location data is recorded.
Further information is available in the informed consent you are required to sign after you log in with your PPMI ID and before you can start using the application.
Recipients of your data may be PPMI study cores, Roche and Roche's affiliates around the world including in countries with privacy standards different from those in your country and potentially other parties as stated in the informed consent form that you signed when joining the research study. Our Roche affiliates will use the data for the same purposes as we do. A list of Roche's affiliates is available in the current annual report which can be found in the Investors section of www.roche.com. Your coded study information will be sent to a central database on behalf of the Sponsor. The database is run by the Laboratory of Neuro Imaging (LONI) in California, USA.
Additional information in case your data is covered by GDPR: Regarding the exchange of data within the Roche Group, contracts containing the EU Standard Contractual Clauses according to the EU Commission decision of 04 June 2021 (EU 2021/914) constitute appropriate and suitable safeguards to ensure compliance with GDPR.
We store your personal data for the duration stated in the informed consent form which you will sign when activating the application.
In accordance with GDPR and UK GDPR, please note that you have the right to request from your study site access to and rectification of your personal data as well as the right to data portability, if applicable, or erasure or restriction of processing of your personal data. Erasure or restriction of processing is only possible if and to the extent the processing of personal data is based on consent or legitimate interest. If data processing is based on consent, kindly note that you have the right to withdraw your consent at any time, however, without affecting the lawfulness of processing based on consent before its withdrawal. For sending a note to exercise your right to withdraw consent, please contact your study site in accordance with the information provided in the informed consent form that you signed when joining the research study.
In the event you have the impression that our data processing is non-compliant with GDPR: You are entitled to lodge a complaint with the responsible supervisory authority.
In accordance with the Swiss Federal Act on Data Protection, please note that you have the right to request from Roche access to your personal data, a copy of your personal data, to rectify your personal data or to have Roche register a note dispute. Additionally, you have the right to erasure or anonymisation of your personal data if it is no longer needed for the purpose for which you provided it, and the right to restrict the processing of your personal data to specific purposes if erasure is not possible. If the processing of your personal data is based on your consent kindly note that you have the right to withdraw consent at any time. However, the withdrawal is only valid for the future and we reserve the right to continue to process personal data in the event of a withdrawal, based on a different basis.