TAS Test Participant Information Consent Form, Version 12, 14th December 2022

TAS Test: Determining the feasibility and validity of online motor-cognitive testing for early detection of dementia

UTAS HREC Reference H0021660

PARTICIPANT INFORMATION SHEET

Research TeamA/Prof Jane Alty, Professor James Vickers, A/Prof Quan Bai, Dr Saurabh Garg, Dr Eddy Roccati, Dr Larissa Bartlett, Dr Katherine Lawler, A/Prof Mark Hinder, Dr Rebecca St George, Chris Parker, Aidan Bindoff, Renjie Li, Xinyi Wang, Kaylee Rudd, Guan Huang, Dr Haley LaMonica, Prof Sharon Naismith, A/Prof Lyn Goldberg, Dr Son Tran, Kai Zhang, Dr Vincent Ezegbe, Dr Leah Beauchamp, A/Prof Yen Lim, A/Prof Peter Kempster, Dr Jessica Collins, Prof Anna King, Dr Bill Connelly, Ms Marlee Wells, Mr Vivian Imbriotis, Mr James Tucker, Dr Rimona Weil, Dr Simone Simonetti, Prof Bruce Taylor, Dr Cynthia Honan.

Contact details: Wicking Dementia Research & Education Centre, University of Tasmania

1. Invitation

You are invited to participate in a research project called: Determining the feasibility and validity of online motor-cognitive testing for early detection of dementia.

2. What is the purpose of this research project?

The purpose of the project is to investigate whether a new computer test that has been developed at the University of Tasmania could potentially predict cognitive decline and subsequent risk of dementia. The new test is called ‘TAS Test’ and it assesses hand and other body movements (motor control) and thinking processes (cognition). This invitation is being sent to participants in several established studies: the Tasmanian Healthy Brain Project (THBP, University of Tasmania), Island Study Linking Ageing and Neurodegenerative Disease (ISLAND and ISLAND Clinic, University of Tasmania), University of Tasmania Multiple Sclerosis studies, Healthy Brain Ageing Program (HBA, University of Sydney), the Neurological Symptoms of COVID cohort (NSCC, Florey Institute of Neuroscience), the Healthy Brain Project (HBP; Monash University) and the Monash Movement Disorders research registry (MDR). This is a long-term project with the following aims:

-To understand whether TAS Test a feasible and valid method for collecting motor (movement) and cognitive (thinking) data online

-To determine whether TAS Test can help predict an individual’s risk of dementia over time

3. Why have I been invited to participate?

TAS Test Participant Information Consent Form, Version 12, 14th December 2022

You are eligible to take part in this study because you are an active participant in one of the following: the THBP (University of Tasmania), ISLAND/ISLAND Clinic project (University of Tasmania), University of Tasmania Multiple Sclerosis Studies, Healthy Brain Ageing Program (HBA; University of Sydney), the Neurological Symptoms of COVID cohort (NSCC; Florey Institute of Neuroscience), the Healthy Brain Project (HBP; Monash University) or the Monash Movement Disorders research registry (MDR, Monash University). Participation in the TAS Test project is voluntary and will not impact your ongoing participation in these studies.

4. Can I do the research study at home?

Yes, the research project involves completing an online computer test called TAS Test that can be done from the comfort of your own home. You can use your own personal computer (laptop or a desktop computer) or borrow someone else’s computer. We recommend that you complete TAS Test in a quiet location at any time that suits you best. For some studies performing TAS Test in the clinic, under minimal supervision may be recommended.

5. How long does it take?

The entire TAS Test protocol will take approximately 20-30 minutes to complete. You can take a break at any point and come back to complete the remaining tests later on.

6. What kind of computer should I use?

Please use a laptop computer placed on a table or a desktop computer. You should sit about 50cm away from the computer. TAS Test does not yet work on ipads, tablets or mobile phones. We recommend using <Google Chrome or Mozilla Firefox> to access TAS Test.

7. What will I be asked to do if I agree to take part?

After you click the ‘Start TAS Test’ link, you will be asked to read and then complete a consent form. You will then be shown some instructional videos and asked for your permission to switch on your computer camera and microphone automatically.

You will then be asked to copy a range of hand movements such as opening and closing your hands for 10-20 seconds. A video of someone doing the movements will demonstrate what you need to do. Your computer camera will video record you as you perform the hand movements. You will also be asked to complete some tests that involve tapping computer keys as fast as you can, some memory and thinking tasks and some speaking tasks, where your computer microphone will record you. We will also collect the following passive data through your interaction with the web interface: log in time, log out time, user's real-time mouse track, click actions on website.

8. Can I come into a research centre to do the test instead?

Most people will complete the test at home. Some participants will be invited into the local research centre or clinic. If you are performing TAS Test in the research centre or clinic, we may also record your hand movements with a faster camera and/or a camera that can

TAS Test Participant Information Consent Form, Version 12, 14th December 2022

measure depth, rather than just the 2 dimensions measured from a standard laptop computer.

6. Will I be invited to do TAS Test again in the future?

Yes, you will be invited to complete TAS Test every 6-12 months so that we can track change over time. If you only want to complete TAS Test on one occasion, you can simply ignore any future invitations.

6. Will you link the TAS Test results with my other study results?

De-identified TAS Test data may be linked with de-identified data from the associated studies (ISLAND, ISLAND Clinic, UTAS MS studies, THBP, HBA, HBP, NSCC, MDR) that you have taken part in so that we can learn more about how the TAS Test data compares to other measures of dementia risk. This data may include, but is not limited to, blood tests (including brain protein biomarkers and genetic test results), brain scans, movement tests, smell tests, clinical diagnoses and cognitive (memory and thinking tests). Only researchers who are part of the associated studies will be allowed to link this data and none of your analysed data will be identifiable (by name or date of birth) when the data is linked together.

7. How will TAS Test predict an individual’s risk of dementia?

Currently, TAS Test is still being developed as a tool that can predict risk of dementia. To do this, we will compare results on TAS Test with results on validated cognitive tests, blood-based biomarkers, brain scans and clinical diagnoses to develop predictive computer algorithms that indicate risk of dementia. These new computer algorithms will then be prospectively validated against a sample of individuals in the ISLAND Project who will be invited to have full clinical assessments with a doctor and psychologist. To do this, we will invite about 200 ISLAND participants randomly selected from those who have cognitive tests (CANTAB) scores in the range that indicates cognitive impairment, and about 100 people from the ISLAND Project who have normal scores on the online cognitive (CANATB) tests. These people will be invited to attend, at no cost, for a detailed clinical assessment at the ISLAND cognitive clinic to clarify whether they have dementia, mild cognitive impairment (MCI) or healthy cognition. All participants who attend the ISLAND Clinic will be informed of their diagnosis at the end of the clinical assessments.

8. Will TAS Test tell me if I have dementia?

At this stage, TAS Test is a research tool that is still being developed. This means that it is not yet possible to tell people whether their TAS Test scores indicate a high risk of dementia. Through undertaking this research project, we aim to develop TAS Test so that, in the future, it can give an indication of someone’s risk of dementia.

9. Will I be identified in any research papers that arise from this research?

No individuals will be identified in research papers. Your data will be combined with thousands of other participants’ data and we will describe group data rather than any individual data.

10. Will my published video and audio data by identifiable?

TAS Test Participant Information Consent Form, Version 12, 14th December 2022

No, we will ensure that we do use any videos or audio data that would be identifiable. If any such data is used in publications we will blur faces, backgrounds, tattoos, watches etc and any other features that would allow identification of an individual. Audio data will not have any identifiable features such as names of dates of births or location of recording attached.

11. Are there possible benefits from participation in this project?

Many people enjoy taking part in research projects and find them interesting. Being involved in this project means you are contributing to research that may help improve movement and thinking tests for people in the future. We do not anticipate any other benefits to you personally from participation in this project.

12. Are there possible risks from participation in this project?

It is very unlikely that you will experience any risks from taking part in this project as it simply involves a short computer test of hand movements, speaking and thinking. However, some people may experience concern about their movements, speaking or thinking processes if they feel they have not completed the tests as well as they expected. If you have any concerns about new symptoms you notice during the test, we recommend you contact your GP in the first instance. If you have any concerns about the research project please contact the research team or ethics board. As this project is conducted entirely online, there may be potential for minimal financial impact due to data consumption in your respective networks.

13. What if I change my mind during or after the project?

Your participation in the TAS Test project is entirely voluntary and you are free to withdraw at any time without consequence. If you would like to withdraw, please contact the relevant staff member as follows: For THBP participants, phone (03) 6226 7759 or email: healthy.brain@utas.edu.au. For ISLAND/ISLAND Clinic participants, phone: 1-800-982-600 or email is island@dementia.utas.edu.au. For UTAS MS related studies please email either Cynthia Honan

cynthia.honan@utas.edu.au

or Bruce Taylor bruce.taylor@utas.edu.au. For

HBA Program participants, please email

e.hill@utas.edu.au

. For NCSS please e-mail

leah.beauchamp@florey.edu.au

. For Healthy Brain Project participants, please email

healthybrainproject@monash.edu

. For Monash Movement Disorders research participants, please email peter-kempster@monashhealth.org

14. What will happen to the data when this project is over?

Each participant will have a unique identification (ID) code assigned. This ID code will link your TAS Test data with the THBP, ISLAND/ISLAND Clinic, UTAS MS-related studies, Healthy Brain Ageing Program, NSCC Healthy Brain Project and Monash Movement Disorders research datasets respectively. For all subsequent analyses, this ID code will used. We will not use any identifying information such as your name. Only named researchers will have access to the TAS Test data including the video recordings of your hand movements, face and upper body. All data will be managed according to the University of Tasmania Privacy Policy. Electronic data will be stored in password-protected files on secure University of Tasmania computer systems and will only be accessible to the authorised researchers and the authorised data manager of this project. This is a long-term project, and we will seek to retain your data for 20 years or longer. In any case, data will be stored for five years after the final publication of the results of this study and will destroyed at this time. Published data will not identify you. Data sets from which all personal identifiers

TAS Test Participant Information Consent Form, Version 12, 14th December 2022

have been removed, including your THBP/ ISLAND/ISLAND Clinic/ MS study/ Healthy Brain Ageing Program/NSCC/Healthy Brain Project/ Monash Movement Disorders Participant ID, may be made available to collaborators of the Wicking Dementia Centre who may bring new methods of analysis, or capacity to meaningfully combine with other data sets, to increase opportunities for new insights into dementia testing.

15. How will the results of the project be published?

Data from this project may be published in high-quality peer reviewed academic journals, conferences, reports and newsletters and will be communicated at public and community events and through the Wicking Dementia Centre and University of Tasmania websites. No participants will be identified in any published data from this project.

16. How is the study being funded?

This project is funded by the Wicking Dementia Centre, which is supported by core funding from the J.O. and J.R. Wicking Trust (Equity Trustees) and the University of Tasmania. This project is also supported by a National Health and Medical Research Council Ideas Grant (2021-25, reference 2004051) and a Royal Hobart Hospital Research Foundation Major Project grant (2022-24, Ref: 22-001)

11. What if I have questions about this project?

If you have any queries, concerns or issues with this project, please contact us as follows: For THBP participants, phone (03) 6226 7759 or email healthy.brain@utas.edu.au. For ISLAND/ISLAND Clinic participants, phone 6226 4790 or email is island@dementia.utas.edu.au. For UTAS MS related studies please email

cynthia.honan@utas.edu.au

or bruce.taylor@utas.edu.au For Healthy Brain Ageing Program

participants, please email

e.hill@utas.edu.au

. For NCSS please e-mail

leah.beauchamp@florey.edu.au

. For the Healthy Brain Project, please email

healthybrainproject@monash.edu

. For Monash Movement Disorders research participants, please email peter-kempster@monashhealth.org.

This study has been approved by the University of Tasmania Human Research Ethics Committee. If you have concerns or complaints about the conduct of this study, you can contact the Executive Officer of the HREC on (03) 6226 6254 or email

human.ethics@utas.edu.au

. The Executive Officer is the person nominated to receive

complaints from research participants. You will need to quote H0021660.

12. How can I agree to be involved?

You can participate in the project by clicking <‘Start TAS Test’ and completing the Consent to Participate in TAS Test Project.>