27 October 2022

Confidential

The information contained in this document is legally privileged and confidential to Lindus, Ad Scientiam and to the participant in the ME&MGopen Study. This document cannot be reproduced in any form or by any mechanical or electronic means, including electronic archival systems, without the written approval of Ad Scientiam.

Introduction

Lindus Health, Ad Scientiam and their affiliates, subsidiaries and related entities (“Lindus Health”, “Ad Scientiam” “we'', “our”, “Party”) are committed to protecting the privacy and security of the personal data we collect about end customers and users of our services (“you/your”).

The purpose of this privacy notice is to explain what personal data we collect about you and how we use it as part of ME&MGopen trial.

The purposes of the trial are to collect data on patients' MG symptoms in a real-life setting, to assess adherence to the use of the ME&MGopen app, and user experience and satisfaction with the app. To meet this objective, 500 participants are expected to be recruited.

Joint Controllers

• AD SCIENTIAM, company registered under number B 795 083 336, whose registered office is located at 38 rue Dunois, 75647 Paris Cedex 13. Contact: https://www.adscientiam.com/fr/contact/  or info@adscientiam.com
• Alexion Pharmaceuticals, Inc., having its principal place of business at 121 Seaport Boulevard, Boston, Massachusetts 02210. Contact: https://alexion.com/contact-alexion
  
• Names and contact details (emails and phone numbers) of GPs, and staff at the Primary Care Groups (PCGs) we work with (we obtain some of this information from publicly available sources such as PCG websites and LinkedIn).
  

The results of the study will be shared with Alexion, in an aggregated form so that your re-identification is not possible.

Processor

LINDUS HEALTH, incorporated and registered in England and Wales with company number 13298185 whose registered office is at 217 Bickenhall Mansions, Bickenhall Street, London, W1U 6BW, United Kingdom.

Sub-Processor

• Microsoft Azure, certified Health Data Host(https://docs.microsoft.com/fr-fr/compliance/regulatory/offering-hds-france#about-hds)Website: https://azure.microsoft.com/fr-fr/ 
• Amazon AWS, a certified Health Data Host (https://aws.amazon.com/compliance/hds/)

Ad Scientiam and Lindus Health may have access to your personal data, for a limited period of time, under the conditions defined in this privacy notice and in accordance with data protection laws for conducting the ME&MGopen trial.

Please read this privacy notice carefully as it provides important information about how we handle your personal information and your rights. If you have any questions about any aspect of this privacy notice you can contact us using the information provided below or by emailing us at: meandmgopen@lindushealth.com

Authorization to use the image and voice of people & transfer of copyright and related rights

Depending on the tests carried out, the application will photograph your face (My Eyelids), and record your voice (My Voice and My Breathing). All these recordings will only be used by Ad Scientiam for the purposes of establishing the technical performance of the application, by comparing indicators calculated from data collected by ME&MGopen app and ground truth (reference). The above mentioned data might be shared with Ad Scientiam’s partners for data labelling (hereinafter “Partners”).

Partners name and information can be found on the ME&MGopen website:  meandmgopen.com

To ensure your confidentiality, only Ad Scientiam and Partners will have access to the file containing the audio and photo recordings.

You authorize, Ad Scientiam and Partners to capture, use and exploit your image and voice, by reproduction and/or representation of the same, solely in the context of the ME&MGopen study. You expressly authorize the use of still images or screen captures. This authorization is granted to Ad Scientiam for the whole world and until 2 years after the publication of the final study report. You therefore waive any claim to Ad Scientiam, its assignees or assigns, for any additional remuneration, indemnity or consideration, in respect of the use of the interview under the conditions defined above. Consequently, you undertake to keep Ad Scientiam and Partners free of any claims and/or proceedings in this respect.

Purposes for processing

Lindus may process your personal data for one or more of the following purposes:

• To pre-screen volunteers in order to assess whether they qualify for the ME&MGopen trial.
  
• To conduct the trial.
  
• To email volunteers information about forthcoming trials that we believe may be of interest to them.
  
• To maintain and expand our patient community database.
  
• To improve our product and services.
  
• To respond to email and web contact form enquiries.
  

Ad Scientiam will process your personal data for the following purpose:

• To conduct the trial
  

Lawful basis for which we process your data

Where Lindus processes your personal data, we will do so under one of the following lawful bases:

• Consent: You have given us your consent to process the data for one or more specific purposes.
  

This privacy notice will help you decide if you want to participate or not in the MEMGOpen trial. You are free to accept or refuse to participate in this trial.

Sharing Your data

If you sign up for the ME&MGopen trial, then your personal data will be shared with Ad Scientiam’s research team, the trial Principal Investigators, and Ad Scientiam Partners.

Your personal information will not be shared to any third party without your prior written consent.

By signing on with a trial, you consent that Lindus Health is allowed to transfer your personal data to one of the following territories: in Europe and in the United-Kingdom and in the United States of America. You’re also aware that privacy laws may be less protective than those in your country of residence. In any case General Data Protection Regulation (EU) 2016/679 is applicable.

How long we keep your data

Ad Scientiam will retain your personal data until 2 years after the publication of the final study report. After this delay, your personal data will be securely deleted or anonymized, for example by aggregation with other data, so that it can be used in a non-identifiable way for statistical analysis and business planning.

Lindus will retain the correspondence table between your personal data and your identity for 15 years after the termination of the study to comply with legal obligations.

Your rights & options

You have the following rights in respect of your personal data:

• You have the right of access to your personal data and can request copies of it and information about our processing of it.
  
• If the personal data we hold about you is incorrect or incomplete, you can ask us to rectify or add to it.
  
• Where we are using your personal data with your consent, you can withdraw your consent at any time. 
  
• Where we are using your personal data because it is in our legitimate interests to do so, you can object to us using it this way. 
  
• Where we are using your personal data for direct marketing, including profiling for direct marketing purposes, you can object to us doing so.
  
• You can ask us to restrict the use of your personal data if:
  
• It is not accurate.
  
• It has been used unlawfully but you do not want us to delete it.
  
• We do not need it any-more, but you want us to keep it for use in legal claims; or
  
• If you have already asked us to stop using your data but you are waiting to receive confirmation from us as to whether we can comply with your request.
  
• In some circumstances you can compel us to erase your personal data and request a machine-readable copy of your personal data to transfer to another service provider.
  
• You have the right not to be subject to a decision based solely on automated processing (including profiling) that produces legal effects concerning you or similarly significantly affects you.
  
• In some circumstances, you may be entitled to obtain your personal data in a format that makes it easier to reuse your information in another context, and to transmit this data to another data controller of your choosing without hindrance. This is referred to as the right to data portability.
  

You will not have to pay a fee to access your personal data (or to exercise any of the other rights). However, we may charge a reasonable fee if your request for access is clearly unfounded or excessive. Alternatively, we may refuse to comply with the request in such circumstances.

If you wish to exercise your rights, please contact us at meandmgopen@lindushealth.com 

You can also lodge a complaint with the Information Commissioner’s Office. They can be contacted using the information provided at: https://ico.org.uk/concerns/

If you are a California resident (even if you are temporarily outside of the state), you have following rights under the California Consumer Privacy Act ‘CCPA”):

• Right to know and right to request deletion: You have the right to request (i) information about our collection, use, disclosure, and sale of your Personal Data and (ii) access to the specific pieces of Personal Data we have about you. You also have the right to request that we delete your Personal Data. You may request to exercise these rights by emailing us at meandmgopen@lindushealth.com. We will verify your request by comparing the information that you provide as part of your request with the information (if any) that we have about you in identifiable form. To make your request, you must provide us with your first and last name, email address, city and state of residence, and the nature of your request (ie, whether you would like information about how handling of your Personal Data, would like the specific pieces of your Personal Data, or would like to delete your Personal Data)
  
• You may designate an authorized agent to make a request on your behalf by drafting, signing, and notarizing a letter that makes clear (i) the identity of your agent and (ii) the purposes for which you are appointing the agent
  
• If you are an authorized agent, you must provide us with the information described above about the consumer on whose behalf you are acting as an agent, as well as your own first and last name and email address, and a letter that has been signed and notarized by the consumer appointing you as an agent
  
• Right to Opt-Out of the Sale of Personal Data: We do not "sell" Personal Data, as that term is defined in the CCPA
  
• Right to Non-Discrimination: You have a right not to receive discriminatory treatment by Ad Scientiam for your exercise of your CCPA privacy rights.
  

Contact Us

If you have any questions, or wish to exercise any of your rights, then you can contact:

Lindus Health
LM.TAP.A
The Leather Market
Weston Street,
Bermondsey,
LONDON,
SE1 3ER

Alternatively, you can email us at meandmgopen@lindushealth.com

Changes to this privacy notice

We may update this notice (and any supplemental privacy notice), from time to time as shown below. We will notify you of the changes where required by applicable law to do so.