Dementia today affects 850,000 people across the UK. The very early signs of Alzheimer’s can appear more than 10 years before an individual is diagnosed but detecting these small changes is difficult. Understanding the very earliest stages of the disease is crucial for advancing research that will prevent, slow down, or even treat the condition.
What is GameChanger?
GameChanger is a nationwide project, supported by the University of Oxford Big Data Institute and the UK Alzheimer’s Society. The study will help us understand what healthy cognition (i.e. thinking) looks like in people from a range of backgrounds using the Mezurio smartphone application or ‘app’. Future research can use this data as a baseline for detecting individuals at risk of developing Alzheimer’s disease.
What will I be asked to do?
GameChanger asks volunteers to play on Mezurio, a smartphone ‘app’ designed by the University of Oxford, for a few minutes each day for a month. You will be asked to complete simple activities requiring the use of memory, thinking and learning skills. In addition, the app will ask about your mood and sleep. We will invite you to participate in GameChanger for a month next year, and the year after. This will allow us to understand what healthy cognitive change looks like.
For participants that signed up to GameChanger in late 2018 and early 2019, round 3 has been delayed until 2022 owing to COVID-19 related reasons. We will be in touch in 2022 to invite you to take part again.
Who can play?
We need thousands of people across the UK to play GameChanger. To take part:
- You must be over the age of 18
- You will need access to a smartphone (iOS or Android device)
- You must NOT have a diagnosis of dementia.
Participation is entirely voluntary. You can delete the app at any time to leave GameChanger.
How do I sign up?
Read this page carefully, then visit the Join GameChanger page to fill out the registration form.
What will happen next?
The first time you use the app, you will be asked to set a preferred time for the app to remind you to play each day. When you receive a reminder, you do not have to complete the task straight away but can wait to play until a time that is convenient for you.
We will ask a few short questions about who you are (e.g. date of birth, sex). You do not have to answer these questions but providing the information will help us understand how volunteer characteristics shape performance.
GameChanger will ask you to complete daily games for a month. Each task will last a few minutes. In addition, GameChanger will ask you a few short questions about your mood, sleep and perceived variation in your thinking abilities each day.
We will invite you to interact with GameChanger for a month annually for the next 2 years. However, for participants that signed up to GameChanger in late 2018 and early 2019, round 3 has been delayed until 2022 owing to COVID-19 related reasons. You will receive an email from GameChanger when your next period of tasks is due to start.
What kind of games will I be asked to play?
The Mezurio app will present you with a selection of tasks. These tasks vary, for example you may be asked to manually tilt your phone to hit a sequence of targets as fast as you can, narrate a short comic strip aloud, or learn where objects in a gallery belong. Each task is designed to last a few minutes. You will be able to interact with the Mezurio app in several ways, including touch, movement and voice.
How do I sign up for subsequent years of GameChanger?
GameChanger will send you an email when your next round of tasks is due to start. This will contain a new unique invite code for the Mezurio app. You may also need to download or update the app before you can get started again. If you do not receive this email or your invite code has expired, you will need to visit the Join GameChanger page and complete the registration form again. Please use the email address you used when you first joined the study so that we can recognise who you are. We will then send you a code to get you started on your next year of tasks.
Will I receive feedback on my performance in GameChanger?
GameChanger does not provide feedback on your individual performance. We will post updates on GameChanger performance across everyone involved in the project on our Blog. We can not use your GameChanger performance to detect, diagnose or calculate risk of dementia.
Linking with other research
GameChanger is developing links with UK-based research projects, for example Children of the 90’s, Generation Scotland, and the Exeter 10,000. If you have already provided information for research, in the future we may be able to connect this information with your performance in the GameChanger study. Linking research in this way creates a more valuable resource for understanding how to detect, slow or even treat Alzheimer’s disease.
What data will be linked?
Examples of information that you may have already provided as part of an existing research study, and that we would like to consider alongside your GameChanger performance include:
- How you have performed on traditional tests of thinking abilities.
- How the genes you carry associate with your thinking abilities.
- Your general state of health, for example blood pressure, cholesterol and medical history.
- Your background and lifestyle, for example your occupation and what you like to do in your leisure time.
How will we link your GameChanger performance to other UK research projects?
If you think you have previously been involved with a UK research project, and are happy for us to check, let us know when you complete the GameChanger registration form. Before attempting to link your GameChanger performance with data held by another UK research project, each research collaboration will be reviewed by the University of Oxford Central Research Ethics Committee.
With your consent, we will share information that can be used to identify you (email address, date of birth or postcode) with approved research projects so they can check whether you are a participant in their study. If you are already a participant in a research project we are working with, we will be able to connect your GameChanger performance with information you provided previously. When we share information it will be pseudonymised, meaning only approved members of the study team will be able to link data back to you based on your unique participant ID code.
The University of Oxford is the data controller with respect to your personal data, and as such will determine how your personal data is used in the study. The University will process your personal data for the purpose of the research outlined above. Research is a task that we perform in the public interest. Further information about your rights with respect to your personal data is available on the University of Oxford website
What types of data are collected in GameChanger?
Mezurio will measure aspects of your memory, thinking and learning, as well as asking you to rate your mood and sleep. Members of the research team will be able to link this information back to you using the unique participant code we provide when you register with GameChanger.
GameChanger will collect the following personal information:
- Email address
- Date of birth
We will collect voice data as part of the story narration task. Natural speech, both what we say and how we say it, provides important clues about how we think. The app will ask permission to access your microphone before you start the task and it will be clear when the app is using voice recording.
What happens to my data?
Data collected by GameChanger will be encrypted and sent to a secure University of Oxford server. We will store your performance on the tasks within Mezurio separately from your email address. Access will be restricted to members of the GameChanger study team.
How will my data be used?
In accordance with UK data protection laws, GameChanger minimises the use of personal information that can be used to identify you. When we analyse your GameChanger performance alongside other participants in the research, it will be pseudonymised, meaning only members of the study team will be able to link data back to you using your unique participant ID code. No identifying information will be included when we share the findings of GameChanger with the wider scientific community.
With your consent, we will use your email address to invite you to take part in GameChanger annually for the next 2 years. You can also ‘opt-in’ to receive updates about new GameChanger activities and research findings.
How long will my data be stored for?
Your GameChanger performance will be held for at least three years in accordance with the University of Oxford guidelines. We will delete any personal data you provide once our analyses are complete, unless you indicate you are happy for us to hold onto them for longer. We ask to hold onto your personal details so we can invite you to take part in future research studies, and to help us identify information you have provided as part of a collaborating research project.
What is Mezurio and who funds it?
Mezurio is a smartphone ‘app’ designed and developed by the University of Oxford which allows you to quickly and frequently contribute to health research from your own home. The data you provide Mezurio will be securely stored and used in regulated research projects. Mezurio is freely available and open to use.
Our work has been funded through research grants from: Roche pharmaceuticals, Eli-Lilly pharmaceuticals, The Robertson Foundation, and Oxford Health NHS FT Biomedical Research Centre.
Are there any benefits or risks to taking part in GameChanger?
No. GameChanger will not reduce the risk of dementia.
What if I wish to no longer take part or play the games?
This is entirely voluntary and you can delete the app at any time to leave the project.
What if I wish to delete data I have already provided to GameChanger?
You are able to withdraw your information from the GameChanger study by following this link. We will be able to delete your data up until it is no longer traceable back to you. Your data will no longer be identifiable at the end of the GameChanger study.
How do I contact GameChanger?
If you wish to provide feedback on the study or have a question about any aspect of GameChanger, please email firstname.lastname@example.org. The research team value your feedback and will do their best to get back to you where a response is needed. If you are unhappy about any aspect of the study, please email email@example.com. To make a formal complaint about the running of GameChanger, please contact the Chair of the University of Oxford Central University Research Ethics Committee who will seek to resolve the matter: firstname.lastname@example.org.
This study has been reviewed by, and received ethics clearance through, the University of Oxford Central University Research Ethics Committee (Reference number: R58202/RE001).