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.
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.
The results of the study will be shared with Alexion, in an aggregated form so that your re-identification is not possible.
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.
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
Data collected from patients enrolled in the ME&MGopen Study:
Names and contact details (email and phone number) of trial volunteers. Information relating to our trial volunteers state of health and lifestyle. The data we collect may vary during the course of the trial. For this reason, it is not possible to provide an exhaustive list, but these include:
Your name and email address when you use the Contact Us form on ME&MGopen website. Any other additional information you choose to provide during completion of the questionnaire.
Lindus Health, in Amazon AWS, certified Health data host located in the United Kingdom
Lindus Health to Ad Scientiam except identification data as name and contact details
Data collected from healthcare professionals involved in the ME&MGopen Study:
Names and contact details (emails and phone numbers) of clinicians, physicians, and staff at the Primary Care Groups (PCGs) and other health organizations involved in delivering our trials.
Information provided to us when you complete the website form to sign up to our patient community. This includes:
Your name and email address when you use the Contact Us form on ME&MGopen website. Any other additional information you choose to provide during completion of the questionnaire.
Lindus Health, in Amazon AWS, certified Health data host, located in the United Kingdom
Lindus to Ad Scientiam in Microsoft Azure, certified Health data host located in the European Union, and to Principal Investigators
Data from the eCRF:
Your name and email address when you use the Contact Us form on ME&MGopen website. Any other additional information you choose to provide during completion of the questionnaire.
Lindus Health, in Amazon AWS, certified Health data host, located in the United Kingdom
Lindus to Ad Scientiam in Microsoft Azure, certified Health data host located in the European Union, and to Principal
Investigators Identification data or related information concerning participant will not be transferred to Ad Scientiam or Principal Investigators
Data collected from patients using the ME&MGopen app:
Ad Scientiam in Microsoft Azure, certified health data host, located in the European Union
Ad Scientiam to Lindus and Principal Investigators except identification data or related information concerning participant
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.
Lindus may process your personal data for one or more of the following purposes:
Ad Scientiam will process your personal data for the following purpose:
Where Lindus processes your personal data, we will do so under one of the following lawful bases:
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.
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.
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.
You have the following rights in respect of your personal data:
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”):
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
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.