Questions about the study
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 firstname.lastname@example.org or 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).
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.
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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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, Android). Please ensure you have downloaded the appropriate version of the app for your operating system. If you believe that you have done this and you are still experiencing problems, please let us know and we will look into this for you.
What version of operating system will the app work on?
For Windows, Microsoft® Windows Server 2008, Windows 7, Windows 8.1 Classic or Windows 10 are all supported (although support for windows 7 may be limited.) 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
For Android, we recommend Android 5.0 and above
I am being asked to download Adobe AIR as well – is this right?
Yes – in order for the app to work properly, adobe AIR needs to be installed. You will be prompted to do this if it is not already installed on your device.
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
How do I log in?
You will be allocated a unique ID which you will need to use to log in to the tests. If you lose this unique ID, 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.
On my iPhone/iPod clicking “Finish” appears to do nothing. Have I submitted my data?
If you can see this message your results have already been submitted, we will make this message less ambiguous in the next revision.
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?
Ideally, 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 1st February 2021.
What are the recommended conditions for taking the test?
We recommend you should be in an environment where distractions are minimised, similar to any other examination space.
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.
Will I receive information about my results?
You will not receive any results from the testing, as there would be no direct benefit to anyone who has taken part. 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.
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.