Frequently Asked Questions

Here are some commonly asked questions. If you don't find an answer here then please contact us.

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Q: What is the purpose of the study?

This study aims to understand how healthy brains age and why people develop dementia.

Q: Why have I been invited?

You may have been invited because you are participating in dementia research conducted by the department of psychiatry at the Chinese University of Hong Kong.

We are inviting adults over 50 from Hong Kong to take part in this study. We are looking for 5,000 or more people to join the study for the next ten years.

You can join this study if you

  • Have a good working understanding of the English language
  • Have the ability to use a computer with internet access
  • Do not have a diagnosis of dementia

Q: Do I have to take part?

It is up to you whether or not to join the study. You are free to withdraw at any time, without giving a reason.

Q: Why are we doing the study?

As we get older our brains also begin to age, resulting in a 'slowing down' of abilities such as memory or reasoning. However, we do not fully understand how or why these changes occur. It is important to understand what affects our brain health and function as we age and why it affects people differently. This information could also provide vital knowledge about who is most at risk of dementia, which currently affects 9.5 million people in China. In order to develop better prevention and treatment for this devastating condition, it is essential to understand cognitive decline and the factors that govern it. This study will address these important issues by measuring cognition in 5,000 or more adults over 50 over ten years through an online study.

Q: What will happen if I take part?

If you decide to take part the following steps will happen:

  1. You will be asked to register on the study website and sign a consent form.
  2. You will be asked to nominate an ‘informant,’ a person who knows you well and spends time with you frequently and will be asked questions about you.
  3. You will be asked to complete a set of questionnaires about yourself, your lifestyle and your health.
  4. You will be asked to complete a series of six online cognitive assessments, for example to test your memory, reasoning and attention.
  5. You will be asked if you would like to be contacted about taking part in future research including treatment studies.
  6. Each year we will contact you by email and ask you to repeat the cognitive assessments and to update your medical and lifestyle information.
  7. We will keep you up to date with the study through a newsletter and the website.
  8. We will contact you at the end of the study to let you know the findings of the research.
  9. All the information we collect will be kept anonymous and confidential. We will keep all data for 10 years after the study has finished. We will then destroy it.

Q: What are the possible benefits and risks of taking part?

This is not a clinical trial and there are no risks associated with any treatment or other intervention. This is an ‘observational’ study, meaning we only wish to observe how you progress over time.

The main advantage of this research is that participants will be taking part in an important research study that could provide valuable new knowledge about how the brain works as we get older. In addition, if you agree to be contacted you will have the opportunity to take part in future important research into the brain, and how we can prevent conditions like dementia.

The Survey and Behavioural Research Ethics Committee/Faculty Sub-Committees at the Chinese University of Hong Kong have approved this research and the research will be covered by normal insurance policies at the University of Exeter and the Chinese University of Hong Kong.

Q: What will happen if I don’t want to carry on with the study?

You can withdraw from the study at any time without giving a reason by emailing the study team at support.protect@exeter.ac.uk. If you withdraw from the study you can tell us whether you would like us to retain any personal information (email address, home address) collected up to the time you withdraw or whether you would like us to destroy this information. For legal reasons we will retain your name and participant ID to ensure we have a record of your consent when you registered. We will retain all anonymised data that we have collected up to the point you withdraw. This includes all anonymised data from assessments and questionnaires.

Q: What if I am diagnosed with dementia?

If you develop dementia you will be withdrawn from the study. If this happens we would like to keep all remaining information you have provided up until that date. However, if you would prefer for personal data collected up to this date to be removed from the study you can indicate this when you email us. If you choose not to destroy the data when you withdraw, you can change your mind about this at any time by emailing the study team. If you decide that you would like us to destroy your personal information please note that we will retain your name and participant ID to ensure we have a record of your consent when you registered.

There is a very small chance that people taking part in this study may develop cognitive impairment or dementia over the ten year period. In the unlikely event we detect a clinically significant drop in your performance in the study tests we will contact you to recommend making an appointment with your doctor to carry out further tests. If you do receive a diagnosis of dementia from a medical professional we ask that you let us know by emailing the study team. The website will provide information, links and useful contacts that may be helpful to you if this situation arises. However, the study team cannot provide detailed medical support or advice.

Q: Will my taking part in this study be kept confidential?

Yes. Research data will be collected online through the study website using Secure Sockets Layer (SSL) software, which encrypts the information you input. All data will be stored securely according to the Data Protection Act (1998), the GDPR and The Personal Data (Privacy) Ordinance (Cap. 486 of the Laws of Hong Kong) (Ordinance).

The study results database will not include your name, just a study number. Your data will be completely anonymised and it will not be possible to identify you.

We will collect some limited personal information including your address. This information will be stored in a secure separate database. A secure list will link your name, study number and personal details. The information will only be available to a small number of researchers on the study team for analysis. We will not pass any information on to any third party.

Q: What will happen at the end of the study?

At the end of the ten year study period you will complete your final annual assessments on the website. We will contact you to let you know the study has ended and to thank you for your contribution. The results of the study will be published in a scientific journal. We will provide you with a lay summary of our findings in the form of a newsletter. The findings will also be available on the study website. The information collected is totally confidential and no individuals will be identified in any publications.

Q: What if there is a problem?

If you have a concern about any aspect of this study, information and troubleshooting pages are available on the study website. If this does not answer your query you can contact the research team by emailing support.protect@exeter.ac.uk

Q: What data will be collected?

We will ask you to complete questionnaires and assessments at annual intervals. The information collected will include:

Basic information about you e.g. demographic characteristics, education, lifestyle (including exercise habits), and medical history.

Cognition function – this is collected by online tasks that measure how your brain is functioning.

Q: Is my data secure?

We are committed to safeguarding your personal information. Whenever you provide such information, we are legally obliged to use your information in line with all laws concerning the protection of personal information.

All personal information is transmitted and stored using the highest industry encryption standards. All assessment data provided is stored anonymously and in a separate database to the personal information which may identify you.

For further details about data security please read our Privacy Policy.

Q: How will the data collected be used?

The data collected will be used to gather important information about what happens to the brain as we age. Participants in the study will complete assessments to monitor their cognition over time. They will also have the opportunity to take part in innovative studies to answer crucial questions such as:

How do key measures, such as memory, language and reasoning change over time as we age?

How do our lifestyle choices, including our exercise habits and diet affect our risk of dementia?

What are the early signs of dementia and how can they be distinguished from normal ageing?

What approaches can be delivered online to influence the ageing process and the development of dementia?

Q: What will the study achieve?

The study will provide valuable information about how the brain changes with age. It will also investigate which factors in mid-life affect our risk of dementia, such as exercise and diet. This knowledge will help develop better approaches to prevent and treat dementia in the future.

Q: How long will the study last?

Participants will be invited to complete a series of assessments online which will be repeated annually over the next ten years.

Q: What happens if I don't complete a questionnaire or test on time?

We encourage you to complete assessments by their scheduled due date. However, if you miss a deadline please continue to submit your data as the information you provide is still extremely important to us.

Q: What is an informant?

An informant is someone we may ask to complete one or more simple questionnaires about you, for example how well you perform various tasks now compared to ten years ago. You must have known the informant well for at least ten years, for example a friend or family member, and they must be age 18 or over.

You will be asked to provide the name and email address of a person who can act as your informant as the final step of registration. We will then invite them to confirm they are willing to act as your informant and if so they will be given their own login account. An informant will not be able to view or access any other information you provide as part of the study nor will you be able to view or access information provided by the informant.

Please note that an informant may already be a participant in the study or can choose to become a participant if they meet the qualifying criteria.

Q: I have forgotten my password - what should I do?

If you have lost or forgotten your password please select Forgotten your password? on the Login page and follow the instructions.

Q: Can I opt out of the study?

Yes, once registered you can opt out of the study at any time by emailing the study team. Opting out will permanently delete all your stored personal information except your name and participant ID number which we are required to keep by law. If you wish to continue the study after withdrawing you will need to re-register and re-enter any data previously submitted.

Q: My question isn't included here - who else can I ask?

Please contact us using the details on the Contact Us page and we will try to answer your question.