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Privacy Policy- The Neureka App
Whenever you play a game or answer questions in the app, that data will be automatically sent to our secure server. We will use this data to ask research questions that help us understand the brain, and might one day help us to prevent disorders of brain health altogether. To collect this data, we need to have your consent. Your participation is voluntary and you are free to withdraw from the study at any time without penalty (we explain how to withdraw from the study from within the app below).
Please ensure you have carefully read all the information about the research study listed in “Research Info” (see below). You can find it again at any time by accessing “Settings”->” Research Info & Consent” section in the app menu.
You provide consent by tapping the “Consent & Continue” button when you first open the app. By tapping “Consent & Continue”, you confirm that:
-You know what data you’ll be sending to us, why we’re collecting this data, and what we’ll use this data for. By agreeing to take part in this research, you give your consent that your pseudonymised data may be used for analysis as part of this research.
-You agree to send this data to us and are aware that this data will be grouped with other participants and these group results will be presented in scientific journals and conferences.
- You give your consent to allow your anonymised data to be made publicly available on public data repositories (e.g. Open Science Framework) so that other researchers can test novel hypotheses and conduct exploratory analyses.
-You understand that you can withdraw from the research by stopping sending us data at any time, without affecting how you use the app
- You understand that you can erase all the data that you have ever submitted by clicking on the “Settings”->"Data Protection" section in the app and selecting “Erase my data”. You will receive an email once your data has been erased by the research team. The only time we won’t be able to delete your data is if we have already performed analyses on it and a scientific report/journal article using this data has been submitted, or if your data has already been fully anonymised.
- You understand that under the data protection legislation, you will have access to any data you provide through the app for up to 10 years after you have provided it, up until the point at which it has been fully anonymised and we can no longer recover your unique contribution. You are free to download all data that you have submitted through the app by tapping "Settings"->”Data Protection”->"Download my data". A password will be required to do this to ensure your privacy and security and data will be sent to your personal email address provided at the time of sign up.
- You understand that the data you provide is confidential as the research team will never disclose any data which is directly personally identifiable to any third party. However, you should understand that there are legal limits that apply to confidentiality in the Republic of Ireland:
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If you provide unsolicited information to the research team pertaining to risk of harm to myself or another person, this additional information is not protected by confidentiality and may be disclosed to the relevant authorities.
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Any information that you provide (solicited or unsolicited) may be disclosed as part of a legal process or police investigation in the Republic of Ireland, without my permission being sought.
- You understand that the data you send us through this app is stored and processed in accordance with EU General Data Protection Regulation (GDPR)
Who can I contact if I have questions, comments or complaints about this study?
Dr Claire Gillan (Principal Investigator)
Trinity College Institute of Neuroscience,
Trinity College Dublin, Dublin 2, Ireland
Email: admin@neureka.ie
Tel: +353 1 896 8528
Research Info
The Neureka app comes from a group of scientists at the Global Brain Health Institute who are trying to uncover new ways to detect and prevent disorders of brain health. The brain is a big mystery and we need the help of people like you to solve it.
At Neureka, we think that everyone should be able to participate in science, that’s why we are taking experiments out of the lab, and into your smartphone. Our team have been hard at work for the past year making games that are not only fun to play, but help us learn about the brain at the same time.
We aim to use your pseudonymized data, combined with data from other players around the world, to conduct one of the biggest neuroscience studies of all time!
What will happen if I agree to take part?
You will be asked to provide an email-address and a password in order to register an account on the app. We need your email address so that you can sign into the app across different devices and so that we can contact you in future about your contribution to science and any future studies you may want to participate in. You can turn email communication off at any time by changing your settings.
After providing your email you will be asked to complete some basic demographic information and to complete a ‘science challenge’, where you will play games that tell us things about how your brain works and provide us with some personal information about your physical and mental health, lifestyle and family history. Once complete, you will be free to play the games whenever you like and to complete additional science challenges, at your leisure.
How long will it take to participate?
To complete the science challenge ‘Risk Factors’, it will take approximately 1 hour and it doesn’t need to be completed in one go. After that, you can play each game as much or as little as you like. Likewise, you can provide us with as much information about yourself as you like in our ‘About me’ section. Other science challenges may take longer, with some of them asking you to play the games according to a schedule for days, weeks or even months. These are entirely optional.
What data will I be sharing?
Your email address, the type of device on which you used the app (e.g. iPhone 6), your performance on the games that you choose to play, the demographic and questionnaire information you will be asked to provide in the science challenges and any other questionnaires that you complete within the app.
What will happen to my data?
We will use the data you provide us from within the app for academic research only. We will share fully anonymized data with other university researchers to help with the collective research effort of improving early detection of dementia and mental health disorders. We will never share personally identifiable information, such as your email address, with anyone. We will publish the findings that your contribution has helped generate in scientific journals and make them available for you to read and share online at www.neureka.ie.
Can I access my data?
You are also free to download all data that you have submitted through the app by tapping "Settings"->”Data Protection”->"Download my data". A password will be required to do this to ensure your privacy and security and data will be sent to your personal email address provided at the time of sign up. Under data protection legislation, you will have access to any data you provide through the app for up to 10 years after you have provided it, up until the point at which it has been fully anonymised and we can no longer recover your unique contribution.
Is it confidential?
Yes. We will not disclose any personally identifiable data (e.g. your email address) to any third party. However, there are legal limits that apply to confidentiality in the Republic of Ireland, specifically if you provide unsolicited information to the research team pertaining to risk of harm to yourself or another person, this additional information is not protected by confidentiality and may be disclosed to the relevant authorities. Secondly, any information that you provide (solicited or unsolicited) may be disclosed as part of a legal process or police investigation in the Republic of Ireland, without your permission being sought.
Is it secure?
All data you provide through the app is encrypted before it is submitted over the internet. The data you send us through this app is stored and processed in accordance with EU General Data Protection Regulation (GDPR) with our procedures for storing and processing data having undergone and passed review by the data protection officer at Trinity College Dublin.
Do I have to take part in the research to use the app?
If you decide that you don’t want to take part in the research then you should go to the “Settings”->”Data Protection” screen (accessed through the settings button in the top right of the app) and deselect “Participate in research”. This will stop any new data from your device being submitted to our server. Your use of the app won’t be affected by this. If you change your mind you can reselect “Participate in research” at any time.
How do I withdraw (i.e., get out) of taking part in the research?
Taking part in this research is completely voluntary. You can stop taking part in the research at any time using the process described above to stop sending any new data from your device to our server. If you want to delete data that you have previously submitted to us from the app then you can email the research team by clicking on the “Settings ”->”Data Protection” and selecting “Erase my data”. This will send us an email to delete your data and your data will be deleted from the server and our off-line data store held on a password protected computer in Trinity College Dublin. You will be notified by email once we have completed the process of deleting your data. The only time we won’t be able to delete your data is if we have already performed analyses on it and a scientific report/journal article using this data has been submitted and/or if data has already been fully anonymised.
How much Mobile Data (i.e. smartphone access to the internet without wifi) does the app use?
Not very much. The average user will use less than 3 megabytes in total during their time using the app. This doesn’t include the data used to download or update the app.
Are there any risks involved in participating?
The risks associated with participating in this research are minimal. However, it is possible that you might find the sensitive nature of some of the questions in questionnaires that you might choose to complete upsetting. If you experience upset or distress we encourage you to contact your General Practitioner/Doctor. We also provide information on support services in a dedicated tab within the app.
Are there any benefits to participating?
This study will not benefit you in any direct way. The data that we collect from you will hopefully allow us to develop a tool to better detect early cognitive changes that are markers of future risk of developing dementia and mental health disorders and in this way your contribution might benefit others.
Will the research team take responsibility for diagnosing app users with dementia or mental health disorders?
No. The games within the app are not diagnostic in isolation and your basic performance level is not indicative of risk for disorders of brain health. Users will not be provided with any processed scores, or individualised predictions on risk of dementia or mental health disorders based on the data that they provide through the app. While we hope that one day, some combination of these measures might help us to detect illness early – the science is simply not there yet.
Who is running this study?
The study is being conducted by a research team based at the Global Brain Health Institute at Trinity College Dublin in the Republic of Ireland. The study has received ethical approval from the School of Psychology Research Ethics Committee at Trinity College Dublin.
In taking part and providing consent, you are agreeing to participate in a study that handles your data in line with the Republic of Ireland Data Protection Act 2018 which is in line with the EU General Data Protection Regulation (GDPR) 2016/679. For information on Data Protection law in Ireland see https://dataprotection.ie/docs/A-guide-to-your-rights-Plain-English-Version/r/858.htm
Who can I contact if I have questions, comments or complaints about this study?
Dr Claire Gillan (Principal Investigator)
Trinity College Institute of Neuroscience,
Trinity College Dublin, Dublin 2, Ireland
Email: admin@neureka.ie
Tel: +353 1 896 8528