Privacy Policy – PDP

1        INTRODUCTION

Thank you for choosing to download the pdp Braincoach app to learn more about dementia prevention. This app is designed to help you be aware of the different risk factors and lifestyle suggestions to reduce your risk of developing dementia through a range of different tips, recommendations, and challenges.

The purpose of this document is to provide you with detailed information on what pdp Braincoach offers. Upon downloading the application, your participation is entirely voluntary. If you decide to register and access pdpBraincoach, you may withdraw at any time.

The pdp Braincoach app received a favorable opinion from the National Research Ethics Committee (CNER) on 11/10/2023. It was authorized by the Ministry of Health on 16/10/2023. However, you should not take this latter information as an incentive to use the application.

2        WHAT IS THE AIM OF THE pdp BRAINCOACH APP?

The pdp Braincoach app is aligned with the aim of the Programme for Dementia Prevention (pdp):  to raise awareness and provide information regarding known risk factors linked to dementia development with an engaging and accessible digital tool. This will encourage users to adopt lifestyle changes and promote healthy behaviours at their convenience. The pdp Braincoach app is an open application available via mobile (Smartphone)  and web browser access allowing the general public to access these new ways to stay mentally fit and to reduce their identified risk factors. Given that there is currently no available treatment to effectively stop or reverse the progression of dementia, pdp follows the latest scientific findings, which highlight preventative measures as a means to reduce the risk of developing dementia. In this context, various modifiable dementia risk factors have been identified by researchers, which, if targeted by active countermeasures, have shown promise in improving cognitive performance.

3        HOW DOES THE pdp BRAINCOACH APPLICATION WORK?

First, download the app from the Apple App Store, the Google Play Store or via www.pdp-app.lu, and create an account. You will then complete a short 5-minute survey called the LIBRA test, which determines which risk factor categories are relevant interests to be accessed in pdp Braincoach. The information collected as a result of the LIBRA test (multiple choice answers) includes the following: gender, education, profession/employment status, weight, height, medical history detailing existing diagnoses and present risk factors (example: depression, social isolation, alcohol/tobacco consumption, cognitive/physical activity, etc.). Next, app users will be advised to continue taking the full questionnaire for a more comprehensive evaluation.

Based on your responses to the LIBRA test, you will have a set of risk factor topics as “Themes” containing a series of content called “nuts” in different formats: tips, challenges and advice/recommendations. You may click on the different items as frequently as you wish to learn more about areas of improvement. However, the application will also send you regular notifications, as indicated below.

What are additional features?

As an active user of pdp Braincoach, there are also push notifications enabled which will remind you to access new and unreviewed content.

When completing challenges, the system will keep track of the assigned points in your account. This will be available on your user activity page.

Over time, the pdp Braincoach app content will be updated to provide new “nuts” for its risk factor topics. This is essential to keeping users engaged in the application and will also provide better insight on what the needs and demands of the application are. If any changes occur, users will be notified immediately via push notification and/or email.

4        WHAT ARE THE POSSIBLE RISKS AND SIDE EFFECTS?

There are no anticipated risks for using the pdp Braincoach app.

5&nsp;       WHAT ARE THE BENEFITS OF USING THE APP?

 

The pdp Braincoach app provides you with the opportunity to learn about measures which may prevent or at least delay the onset of dementia, according to the latest scientific findings. By accessing its varied content, it shares helpful recommendations and facts about specific modifiable risk factors according to the results of the LIBRA test.

 

6        CONFIDENTIALITY AND PROTECTION OF PERSONAL DATA

 

The University of Luxembourg is responsible for collecting, analysing, and, more generally, processing your personal data, and for ensuring that it is protected, in accordance with the General Data Protection Regulation (EU) 2016/679 of 27 April 2016 (known as the GDPR) and all subsequent texts replacing or supplementing this Regulation, in particular, Luxembourg’s law of 1 August 2018 on the organisation of its National Commission for Data Protection and the implementation of the GDPR (collectively known as the Law on Data Protection).

 

What type of data will we collect?

pdp Braincoach processes personal data that you provide yourself in the app, and that make it possible to use the app via mobile (smartphone) or web browser access (www.pdp-app.lu).

 

Is there special and/or sensitive personal data that we process?

As mentioned above, the pdp Braincoach app processes personal data upon registration for selective purposes only, such as allowing the user to access/login to the personal account, to access the app, answer questionnaires and view the content of the app. Personal data is also processed in order to calculate the risk profile and to give customized advice on which “Themes” are relevant in this regards. We neither request nor process identifiable data. Your data is pseudonymised, and a username is automatically generated during registration.

 

The personal data we process are:

  • Age
  • Gender
  • Email address
  • Canton/region of residence
  • If you are currently a pdp participant (Yes/No)
  • Information about your activities on the www.pdp-app.lu website, or in the pdp Braincoach app.

 

On what legal basis will we process your data? 

The use of your personal data is only necessary in the case of public interest and for the purposes of scientific research (art. 6.1e and art. 9.2j of the GDPR).

 

pdp Braincoach processes your personal data based on your authorization which was provided prior to using the app. The data is used for follow-up purposes :

  • To enable you to create an account;
  • To analyze your behavior on the website (/in the app) in order to improve the functioning of the website or app
  • improve and tailor the range of related risk factor content to your preferences.

 

Who will have access to your data?

 

The pdp Braincoach app has been designed and is operated by Betawerk (Netherlands). As the processor, the registration data (also known as the Personal Identifiable Information (PII)) will be pseudonymised by Betawerk through hash encryption to automatically generate a User ID. It is then transferred to the pdp team via the Luxembourg Centre for Systems Biomedicine (which is part of the University of Luxembourg). Only authorised members of the pdp team will be able to access your data:

 

Names or data that directly identifies you, such as email address, age, gender, and canton of residence:

This will be accessed mainly by the developer (Betawerk) to be pseudonymised and stored in their secure servers. A limited number of members of the pdp team (neuropsychologists and management from UL/LCSB) will also request access to an account should a user request a modification, deletion or cancellation of their account.

 

Coded (pseudonymised) data:

  • The Principal Investigator involved in the programme
  • The project manager (UL/LCSB) of the programme
  • The pdp team (neuropsychologists and secretaries, UL/LCSB)
  • Other researchers or external research organisations belonging to the private or public sector may have access to your pseudonymised data to meet the needs of the programme (under no circumstances will we provide them with data revealing your identity). In case of emerging research questions, specific and separate study protocols will be submitted to the Health Directorate and CNER, requiring specific consenting by the participants for accessing the data available in the application. In addition, we may provide access to your pseudonymised data to service providers who perform services on our behalf. Finally, in the context of certain controls or audits, the competent authorities may also have access to your personal data.

 

You can send a request for inspection, correctness, deletion, or transfer of your personal data or request for withdrawal of your consent or objection to the processing of your personal data to info@pdp.lu or (+352) 247-75600.

 

What are your rights? You will have the right to access and amend your personal data. In certain cases (in accordance with the conditions set out by the law), you will also have the right to object to the way in which your data is being used, to request that your data be deleted, to ask to restrict certain aspects of the processing of your data, to retrieve your data so that you can send it to a third party (right to data portability). If you wish to exercise your rights, you may contact the pdp team at info@pdp.lu  or via (+352) 247-75600.

 

Lastly, you have the right to lodge a complaint with Luxembourg’s National Commission for Data Protection (CNPD) in relation to the processing of your personal data.

 

For any request for information concerning the processing of your personal data by the LCSB of the University of Luxembourg, you may contact the respective data protection delegate by e-mail at dpo@uni.lu or by post:

Université du Luxembourg

Data Protection Officer

2, avenue de l’Université

L-4365 Esch-sur-Alzette

Luxembourg

 

How do we protect your personal data? 

The LCSB of the University of Luxembourg takes appropriate security measures, based on the sensitivity of the information concerned, to protect your data from the risk of unauthorised access, loss, fraudulent use, disclosure, modification and destruction. Your data will be treated as strictly confidential. It will also be pseudonymised, meaning that an automatically generated username will be assigned following registration. This will not directly identify you and will only be used to process your data for scientific purposes.

 

pdp Braincoach takes the protection of your data seriously and takes appropriate measures to prevent misuse, loss, unauthorized access, unwanted disclosure and unauthorized changes. If you are concerned about your data not beingproperly secured or if there are indications of abuse, please contact us via info@pdp.lu.

 

If the pdp Braincoach app is deleted, the data remains stored as it is linked to the account and not the device itself. The account user must request for their personal data and account to be deleted from storage. To withdraw, cancel or delete personal data and activity from pdp Braincoach, requests must be made to: info@pdp.lu or (+352) 247-75600.

 

For how long will your data be stored?

Your data in its non-identifiable (pseudonymised) form will be stored following the applicable legal provisions (art 5.1e of the GDPR) for 10 years from the end of the programme, currently planned for August 2024. Thereafter, the need for further retention of this data will be reassessed upon submission to the CNER by August 2034. 10 years is standard retention period for a research project in order to meet archiving requirements following publication.

 

Are there cookies, or similar techniques, that we use?

pdp Braincoach only uses technical and functional cookies for essential purposes which do not infringe on your privacy, such as Google Analytics. A cookie is a small text file that is saved on your computer, tablet or smartphone when you first visit this website. The cookies we use are necessary for the technical operation of the website and your ease of use, such as viewing video clips. They ensure that your website works properly and, for example, remember your preferred settings. We can also use this to optimise our website/app. You can opt out of cookies by setting your internet browser so that it no longer stores cookies. In addition, you can also delete all information previously saved via your browser settings.

 

7        COSTS ASSOCIATED WITH YOUR PARTICIPATION

 

There are no costs associated with the pdp Braincoach app. Usage is free of charge.

8        YOUR DECISION TO PARTICIPATE

Your decision to accept or decline becoming a pdp Braincoach app user is entirely non-obligatory. Before participating in the application, the User Information Sheet (including Privacy Policy) and Electronic Informed Consent Form provide all the necessary details which you will need to read and agree before starting. These documents may be accessed online and can be printed at any time.

pdp Braincoach disclaimer

In using the pdp Braincoach app, every user is advised that:

  • The pdp Braincoach app provides general insights on the modifiable risk factors associated with dementia risk reduction.
  • The information provided within the pdp Braincoach app should not be taken as a diagnostic resource nor a treatment and is not equivalent to an assessment from a qualified medical professional.
  • The pdp Braincoach app is not classified as a medical device, nor is it associated with medical claims.
  • For specific and additional concerns (including any questions regarding personal dementia risk and their LIBRA score), users should consult their practising physician directly.

If you would like further information, please contact the pdp team.

Email: info@pdp.lu

Tel: (+352) 247-75600

Electronic Informed consent form 

  • I declare that I have received sufficient information about the pdp Braincoach app and its purpose. I declare that I have read and understood the information provided in the “User Information Sheet (including the Privacy Policy”.
  • I understand that my data will remain stored for the duration of the Programme for Dementia Prevention funding.
  • I am aware that my activity in pdp Braincoach is entirely voluntary and that I am free to withdraw, cancel or delete my personal data at any time. I will need to inform the pdp team at info@pdp.lu of my decision.
  • I accept that the results from this study may be disclosed and reported in scientific communications or publications. The way in which these results are presented will in no way enable me to be identified, either directly or indirectly.
  • As described in the information document on the processing of my personal data as part of this programme, I understand that any personal information gathered in relation to this study will be treated as strictly confidential, in accordance with the General Data Protection Regulation (EU) 2016/679 of 27 April 2016 (known as the GDPR) and all subsequent texts replacing or supplementing this Regulation (in particular, Luxembourg’s law of 1 August 2018 on the organisation of its National Commission for Data Protection and the implementation of the GDPR).
  • I have complete access to this document explaining how my personal data will be processed as part of pdp Braincoach.

Click here if you would like to access the pdp Braincoach User Information Sheet (including Privacy Policy).

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