Questions about the study
How is my genetic information being used?
On enrolment to the NIHR BioResource, all volunteers are asked to complete a standard questionnaire about their health and lifestyle (e.g., weight, height, smoking status etc.).All volunteers also provide a DNA sample. We aim to use this clinical and genetic information in combination with your cognitive test results.
Have I been invited to take part because I have a pre-disposition to dementia?
No. You have been invited to participate because you are a volunteer with the NIHR BioResource and have agreed to be contacted about medical research. The aim of this study is to learn more about brain and cognitive function in the general population.
Does a diagnosis of a medical condition make me ineligible for the study?
We welcome everybody to take part in this study, regardless of whether you have been diagnosed with any medical condition. As long as you are capable of completing the tests independently (i.e. without help from another person), you are free to participate.
Can I withdraw from the study at a later date if I no longer want to be involved?
Taking part is entirely voluntary and you can change your mind at any time. You do not need to give a reason. If you would like to withdraw from the project, we would ask you to contact us by emailing email@example.com calling on 0800 090 22 33 so we can register your withdrawal on our systems and get any feedback you may have of using the study tests.
The NIHR BioResource offers you the option for no further contact (but retaining data already collected) or no further use (no further contact plus stopping using existing data or collecting new data).
Can I still participate in the study due to coronavirus (COVID-19)?
The BioResource Genes and Cognition Study is an online study only. This means that you can read our study information and fill in our online questionnaire from your own home. The study team are still available to contact at firstname.lastname@example.org if you have any questions or issues.
Will I get paid for taking part in the study?
You will not be paid for taking part in the study. However, your contribution to the study will help future discoveries in neurodegeneration and dementia research and could potentially lead to a medical breakthrough in how these conditions are treated.
My diagnosis/medication/circumstances have changed since I completed the survey, should I complete it again, so it is now up-to-date?
With thousands of people undertaking the study, many may have their medication, lifestyle or health circumstances change since undertaking the survey. The survey is designed to be a snapshot at a particular point in time for each participant. There is currently no need to complete the survey again, but we may send out the test again within the next 3 years for all participants to repeat.
How is the information I give you kept confidential?
Keeping your information secure is our highest priority. There are a number of regulations and policies that the study complies with to ensure data is protected.
Storage and work on personal data will always be in accordance with the current ethical guidelines. In the event that ethical guidelines are modified, the project will be further evaluated for ethical approval. All data will be stored at NIHR BioResource and Imperial College (who provide the test and store the test data on a cloud system based in the UK) in accordance with the GDPR. All investigators and study site staff must comply with the requirements of the Data Protection Act 2018 and the General Data Protection Regulation (GDPR) with regards to the collection, storage, processing and disclosure of personal information. Personal data will be regarded as strictly confidential.
All the information provided by you will be held on a research database for use in medical research. The data will be held key-coded against a unique study number assigned to you and with all personal identifying information removed (i.e. pseudo-anonymised). Only pseudo-anonymised data may be transferred to researchers (both academic and commercial) in the UK and overseas for future research.
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Is there a web-based version of the cognitive tests?
There is not a web-based version of the cognitive tests. Instead the cognitive tests for this study are available via three apps: Windows, IOS and Android. Development of the cognitive tests as an app means that, once the app has been downloaded, the tests can be completed without an internet connection. An internet connection is only required once you have completed the tests and are ready to submit your results, so the data can be uploaded. (A web-based version would be reliant on a stable internet connection throughout, and if the internet connection was interrupted, this would have a detrimental impact on the cognitive test results.)
Trouble downloading the app
You will need to download the app onto your machine, complete the tests, and then submit the results. There are 3 versions of the app dependent on the operating system your computer uses (Windows, iOS (for iPhone, not Mac), Android). Please ensure you have downloaded the appropriate version of the app for your operating system, and refer to the step-by-step download guide for assistance with this. If you believe that you have done this and you are still experiencing problems, please let us know at GenesCognition@addenbrookes.nhs.uk and we will look into this for you.
What version of operating system will the app work on?
For Windows, Windows 10 is supported. For Windows 10, we suggest that you ensure you are on the latest supported platform with the latest patches (these are freely available for download).
For iOS, we recommend iOS 9 and above. Note, although this is an Apple product, this is for iPhones and iPads, not for Macs.
For Android, we recommend Android 5.0 and above
(Please note: the IOS app is for iPhones (and most older iPads), and will not work on the Apple Mac. If you are a Mac user and would like to complete the cognitive tests, we recommend using an alternative device if you have one available.
Does the app work on phones and tablets?
Yes, but please note that some of the tests may appear quite small on a phone, making them harder to complete.
I note that the app states it will require access to all my files, peripheral devices, apps, programs and registry, and my Internet connection. Why is this?
Over and above installation and basic input, all the app needs is to check your internet state and use it to upload results. Microsoft has reviewed the package and certified it safe for adding to their store, but the Windows store raises warnings on non-Windows 10 PCs regarding certification. More information is available at: https://docs.microsoft.com/en-us/windows/uwp/packaging/app-capability-declarations
Will my IP address be recorded?
We do not record your IP address during the study. We only record the device model (for Android and iOS) for troubleshooting issues and to allow for adjustments where needed for reaction-based scoring.
How do I log in?
You will be allocated a unique study reference code which you will need to use to log in to the tests. If you lose this code, please contact the BioResource team email@example.com who can re-issue this to you.
How do I know this is not a spam email?
In order to verify the email, always check that the sending email address is from the official BioResource email address: firstname.lastname@example.org. Alternatively, you can go to your internet browser and manually visit our webpage/check the URL address in the bar of your browser rather than clicking on the link in the email. If you have any concerns, please contact us on: email@example.com.
How do I know that the app is safe to download, and not malware?
You can look specifically at the app’s developer (which will be Imperial College London). You can also look at the permissions that the app requires before you download it. Be on the lookout for suspicious permission requests that do not relate to the app’s intended purpose.
What if multiple people in my household have been offered the study but all use the same computer? Will the app log out of the previous user?
Once the test is complete, the next time it is launched/opened it will be a new session and a new ID may be entered, so that it can be associated with another member in the same household. Ideally, the test should not be viewed by family members prior to them taking it, in order to avoid extra time to view questions.
Does my screen need to be on maximum?
Ideally screen brightness should be set to a level where you can comfortably read text, but brighter is probably better particularly for some of the tests.
Do I need to have sound on?
There are no audio requirements for any of the tests.
Can I uninstall the app once I’ve finished?
Yes, it is safe for you to uninstall the app once you have finished the tests. We will ask you to complete the test once more over the next three years but this will likely be on an updated version of the app.
What are the recommended conditions for taking the test?
We recommend that you set aside 30 minutes in an environment where you will not be interrupted and where distractions are minimised, similar to any other examination space. Please be prepared for the test to start promptly once you have completed the survey.
Can I stop mid-test and continue later?
There are 10 tests in total (each taking 2-4 minutes) and you can pause between the tests, but not during a test. You will need to complete all 10 tests before you can submit the results. The app does not save the tests until you submit them after completing all 10, so if your computer crashes mid-test, this data will not have been saved and you will need to repeat all of the tests.
As long as you don’t close the app or restart your device it will wait between tests for you to continue. Some questions time out after a certain period of inactivity and move onto the next question, and some tests have time-constraints, so we would encourage you to complete all the tests in one go if you are able to – this should only take you 20-30 minutes.
If you don’t have an internet connection the app will wait and allow you to retry to upload your results (prompted)
Can I skip a test?
No, there is currently no mechanism to skip a test.
Do any of the tests require looking at colours – what if I am colour-blind?
There is a pre-test survey which will ask you whether you are colour-blind. There are tests with colours which require distinguishing between black, blue, red and white colours.
Can someone else (e.g. a carer) help me to complete the tests?
We would ask that you complete the tests as best you can by yourself, rather than getting anybody to help you with them.
Once I have submitted my 10 tests, can I re-do them again or will I be locked out?
We would ask that you complete the tests once and submit your results straight away as there are no right or wrong answers for these tests. While the tests can be repeated and resubmitted, we will take the first/earliest set of results and discard later ones for the same unique ID.
How do I get back in to complete the tests?
Unfortunately this is not possible; re-opening the app will start from the beginning. We suggest you completing all the tests in one go – this should only take you 20-30 minutes.
How long have I got to take the tests (do they expire)?
The app will be available to download until May 2021.
Will I receive information about my individual results?
We are not able to provide individual results to participants. The results would not influence medical care, and returning the results without any context/comparisons to the rest of the cohort would not be meaningful. The study team wishes to avoid the potential to cause undue anxiety if participants’ test results do not match their expectations. However, if you do decide to take part, your valuable participation will make a contribution to science and future improvements in NHS care, in particular for dementia research.
How will I be informed of the overall results of the study?
We will publish our findings in an open access scientific journal. In addition, the NIHR BioResource will periodically communicate a lay summary of their projects (including progress and any results or publications) to all of their volunteers.
Will the tests be used for diagnosing dementia or neurodegenerative conditions?
No. The information from the tests you complete would be insufficient for any clinical diagnosis to be made, or medical advice to be offered.
Do I have to disclose my participation to my life insurer?
You do not normally have to disclose your research participation to your life insurer including any genetic tests for research that you have completed during your participation in the BioResource.