Frequently Asked Questions
Here are some commonly asked questions. If you don't find an answer here then please contact us.
Here are some commonly asked questions. If you don't find an answer here then please contact us.
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.
Participants will be invited to complete a series of assessments online which will be repeated annually over the next ten years.
Yes, once registered you can opt out of the study at any time by selecting the Withdraw from Study option from the My Account section of your dashboard. You will be able to choose whether your personal data that identifies you is deleted permanently. If you permanently delete your data and wish to continue the study after opting out, you will need to re-register and re-enter any data previously submitted.
You can find details of the PROTECT study within the participant information sheet and informant information sheet but if you still have questions, you are welcome to contact us using the details on the Contact Us page.
PROTECT works with all the latest popular browsers including Chrome, Edge, Firefox and Safari. If you experience difficulties with screen appearance or game behaviour we recommend you check for updates and upgrade to the latest browser version. The browser version can usually be checked using Help->About from your browser menu.
Interactive games and exercises are better played on a tablet or laptop rather than a phone.
PROTECT generally works without any problems using standard default browser settings. If you experience problems please check your browser settings, the following options must be enabled:
These can typically be enabled using the Settings or Internet Options menu options in your browser. Please refer to your browser documentation or help if you cannot find these.
Mobile devices can be used to browse the site, complete assessments and play the interactive games. Because of the limited screen width of some mobile phone devices some of the interactive assessments or exercises may not appear correctly.
Please allow up to 24 hours for the email to arrive. If it hasn’t arrived, please check the following:
If you have forgotten your password, please select the Forgot your password? link on the sign-in page and we will send you an email with a link to allow you to reset it.
Your username is the email address you used when you registered. We would have sent an email to this address to confirm your email address when you first registered. This email also included a Registration ID number. If you kept a note of your Registration ID number, contact us using the details on the Contact Us page and we will be able to use your Registration ID number to look up the email address you used to register with us.
For security reasons your account will be locked after 3 consecutive failed sign-in attempts. If this happens please wait for at least an hour when you can try again or contact our Help Desk who will be able to unlock the account for you.
To change your password please sign-in and select Reset Password from the My Account section of your dashboard.
To continue receiving our emails please sign-in using your old email address and select Change email address from the My Account section of your dashboard and provide us with the new email address. You will be sent an email to confirm your new email address. You can then sign-in using your new email address as your username.
It is important we have your up-to-date address when sending out DNA sample kits. To update your address please sign-in and select Change address from the My Account section of your dashboard and provide us with the new address.
If you cannot complete your assessments by their due date, we will record a missing data point for the current round of assessments and the assessment will become available in the next round of assessments if it is a recurring assessment.
The assessments become available when you begin the cognitive tests each year so if you are going to be away, you can wait until you return to begin.
We would prefer you to complete assessments by their due date or as soon as possible after this, but don’t worry if you can’t, many assessments will still be available for six months. In the meantime, you may receive automated email reminders.
We would prefer you to complete all repetitions within the available time window as this will give us more accurate data, but don’t worry if you can’t, any data you have submitted is still very valuable to us.
Some assessments don’t allow you to restart if already started or the time window for completing has expired. If you don’t think your time window has expired, please try again leaving at least 24 hours before retrying. If you cannot restart the assessment any data already provided will have been saved and will still be useful.
Once an assessment has been submitted it cannot be retaken. Please review your answers carefully before submitting. For certain assessments you may be given the opportunity to retake it if you have registered a low score, this will appear as a prompt immediately after submission.
This is probably a memory or performance issue with your device. Please close all other browser windows and applications on your device and try again. Also check your browser is compatible (see Is my browser compatible? in this FAQ).
If the problem continues please contact us using the details on the Contact Us page.
We have tried to provide clear written instructions for the games. There is also a short, animated clip which appears when the game is selected, usually after a short pause, which demonstrates how to play. You can view the instructions again by clicking on the button with the question mark. If you are still unsure, please contact us using the details on the Contact Us page.
This information is relevant to all PROTECT study participants who registered on the study prior to January 2019. It gives more detail about the process of moving the PROTECT study management from King’s College London to the University of Exeter, what is happening to your data during this process and what your rights are.
Management of the PROTECT study has moved from King’s College London to the University of Exeter. This is because the Chief Investigator (Dr Anne Corbett) and several other researchers on the PROTECT team are now employed by the University of Exeter. The University of Exeter is now the sponsor of the study, meaning it is responsible for the overall management of the study, including safeguarding of participants and ensuring data is stored and used appropriately. King’s College London is now a research site for the PROTECT study, meaning they will continue to support the study alongside the University of Exeter.
In addition, a new website has been created for the PROTECT study which we hope participants will find to be easier and more enjoyable to use. This website is due to go live for existing participants in Summer 2019, at which point the current website will be closed down. Anyone accessing the PROTECT study will be redirected to the new website.
Your data will be transferred to the University of Exeter. The lawful basis for this process under the General Data Protection Regulations (GDPR 2018) is to carry out research as a ‘task in the public interest’.
If you do not want your data to be transferred to the University of Exeter you can choose to withdraw from the PROTECT study without affecting any healthcare you receive or your legal rights. Your personal data will not be transferred and can be destroyed if you wish. Any anonymised data will be retained for research purposes according to the consent you gave when you joined the study.
You will have received an email asking you for consent to move your PROTECT study account to the new website at the University of Exeter. If you choose to give consent then all your data will be uploaded to the new website. You will receive an email to let you know when you can log onto the new website and continue your participation in the study.
If you do not give consent for your account to be moved then your data will continue to be held at the University of Exeter, but will not be used to create a new account on the new website. If you attempt to log into the new website we will give you the option of re-activating your account, at which point your data will be reinstated on the new website.
If you choose to withdraw from the study then your account will not be moved to the new website. You can choose to destroy your personal details as per the normal withdrawal process for the PROTECT study.
This process has been approved by the Research Ethics and Governance Office and Sponsor Representative at the University of Exeter, and Research & Development Offices at King’s College London and South London and Maudsley NHS Foundation Trust, operating under the PROTECT study approvals from the London Bridge NHS Research Ethics Committee and the Health Research Authority. The process is compliant with guidance from the Information Commissioner’s Office and with the GDPR and Data Protection Act 2018 legislation.
You can find out more about the lawful basis of data processing through the Information Commissioner’s Office website https://ico.org.uk/for-organisations/guide-to-data-protection/guide-to-the-general-data-protection-regulation-gdpr/lawful-basis-for-processing/public-task/
Additional information is available from the Health Research Authority: https://www.hra.nhs.uk/about-us/what-we-do/our-transparency-agenda/
You can contact the PROTECT study team by using the Contact Us page on this website: Contact Us
We invited you because we believe you might benefit from taking part in the VitaMIND trial. The aim of the trial is to test whether taking vitamin D supplements might benefit brain health in people who are thought to be at a higher risk of cognitive decline in the future. To produce the list of people we invited to the VitaMIND trial we compared PROTECT participants’ individual scores on the cognitive tests with the average scores of people of the same age and selected those participants whose scores were lower than the average on two or more of the cognitive tests.
We would like to reassure you that your test scores are still in the range that is considered normal. The tests used in PROTECT are extremely sensitive and pick up subtle changes in cognition, which would not be detected by an assessment with a GP. Also to reassure you it is likely that you would not notice them in yourself. Research indicates that below-average scores indicate a small yet potentially increased risk of cognitive decline in the future. It does not place any certainty on the development of a clinical condition, in the same way that having high blood pressure does not mean a person will definitely develop a serious heart condition. However, this is the reason why we, as researchers, feel it is so important to recruit people with these very early changes to take part in clinical trials as part of our drive to improve understanding of how we can reduce the risk of potential cognitive decline or dementia in the future.
We would contact both you and your GP in the event that a significant drop in your performance on the PROTECT cognitive tests was detected. Please be reassured that the scores that make you eligible for VitaMIND do not warrant involvement from a GP according to our protocols, although of course we would encourage you to speak with your GP if you are ever concerned about your cognition, or if you are concerned about receiving this invitation.
The Alzheimer's Society can provide support and more information about dementia. Their website contains information on ways to reduce your risk of developing dementia such as staying physically active, doing brain training games/crosswords and other puzzles, and eating healthily. Here is a link to their website: https://www.alzheimers.org.uk. You can play the brain training games on the PROTECT website at any time.
The most likely reason you are ineligible is that the Vitamin D Deficiency Calculator estimated that you are not at risk of vitamin D deficiency. If you submitted the first screening questionnaire to check your eligibility and were immediately taken to a page that told you that your are ineligible, your levels of vitamin D were estimated to be adequate. We cannot ask you to take a supplement so we do not put you at risk of taking too much vitamin D.
If you submitted the first screening questionnaire and did not tick all of the following statements, you are ineligible:
If you are taking over the counter vitamin D supplements, and ticked all the other statements and wish to try registering again, you can stop taking the vitamin D supplements for 28 days to allow it to be cleared from your body. If you do this, please contact us and we will send another invitation.
An informant is someone we may ask to complete one or more simple assessments 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 during registration or you can add these details later. We will invite them to confirm they are willing to act as your informant and if so, they will register for their own study 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 any 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.
Nominating an informant is an optional part of the study; if you’re not able to nominate an informant, we would still like you to take part as all other assessment data you provide is still very valuable to us.
To change or remove your informant, please sign-in and select Change Informant from the My Studies > PROTECT Study Participant section of the dashboard and then follow the instructions.