Dementia risk assessment

1. What is the research study about?

   You are invited to take part in this research study. The research study aims to collect data on risk factors for dementia in adults aged 18 and older. This questionnaire includes items on your age, sex, education level, your lifestyle habits and health factors. It uses information obtained from published studies to assign risk scores to the responses to the questionnaire. On completion of the questionnaire, you will be advised which health and lifestyle factors may pose a risk for developing dementia, followed by expert advice and recommendations. It is also hoped that the knowledge you gain from completing this questionnaire will increase your dementia literacy and awareness of probable risk factors.

2. Who is conducting this research?

   The study is being carried out by the following researchers: Prof. Kaarin Anstey, Dr Ruth Peters, Dr Scherazad Kootar and Dr Md Hamidul Huque, all from UNSW and Neuroscience Research Australia (NeuRA). Research Funder: This research has not been funded by any specific research grant.

3. Inclusion/Exclusion Criteria

   Before you decide to participate in this research study, we need to ensure that it is ok for you to take part. The research study is looking recruit people who meet the following criteria:

   • Adults aged 18 years and older.
   • Have access to internet services and have a computer, mobile, tablet, etc.

4. Do I have to take part in this research study?

   Participation in any research study is voluntary. If you do not want to take part, you do not have to.

   If you decide you want to take part in the research study, you will be asked to:

   • Read the information carefully (ask questions if necessary);
   • Complete the online questionnaire.

5. What does participation in this research require, and are there any risks involved?

   If you decide to take part in the research study, we will ask you to complete an online questionnaire. The questionnaire will ask you questions about your personal information. health, lifestyle, and other related questions to provide information on your dementia risk profile. It should take approximately 20 to 30 minutes to complete.

   If you experience discomfort or feelings of distress while participating in the research and you require support, you can stop participating at any time. You can also tell a member of the research team and they will provide you with assistance or alternatively a list of support services and their contact details are provided below.

   If at any stage during the study, you become distressed or require additional support from someone not involved in the research please call:

   Contact for feelings of distress

   Name/Organisation	Lifeline Australia
   Telephone	13 11 14

6. What will happen to information about me?

   Submission of the online questionnaire is an indication of your consent. By clicking the ‘I agree to participate’ button you are providing your permission for the research team to collect and use information about you for the research study.

   The research team will store the data collected from you for this research project for:

   • A minimum of 7 years after the completion of the research;

   The information about you will be stored in a:

   • De-identifiable format – your survey responses will be assigned a unique code that can be linked to your personal details. Your personal details will be stored separately to your survey responses and will be protected from linking by strict role based access privileges. Only staff with the highest level of accesses will be able to link your survey responses. This privilege will be assigned to the Project Data Manager who has ethical approval to link the data for research purposes only.

   Statement about temporary data use: In order to calculate the risk score we will need temporary access to the anonymized survey responses in your web browser. This data will, for a brief moment, be sent to our servers to calculate the response to send back to you. After that the data is erased and is in no way accessible by any staff member.

   You will be asked to provide your consent for the research team to share or use the information collected from you in future research that:

   • Focuses on identifying risk factors for dementia, or evaluating how to reduce risk of dementia and other chronic conditions to promote healthy ageing;

   Your information will only be shared in a format that will not identify you.

7. How and when will I find out what the results of the research study are?

   A copy of the results of the research can be emailed to you. If you prefer to have a hard copy of the results sent to you then please provide your mailing address in the consent form.We will only use these details to send you the results of the research

   If you would like to receive a copy of the results you can let the research team know by inserting your email or mailing address in the consent form. We will only use these details to send you the results of the research.

8. What if I want to withdraw from the research study?

   If you do consent to participate, you may withdraw at any time. You can do so by completing the Withdrawal of Consent Form. Alternatively, you can ring the research team and tell them you no longer want to participate - +61 2 9399 1043 Monday – Friday, 9am-5pm (AEST). If you decide to leave the research study, the researchers will destroy any information that has already been collected and no additional information will be collected from you. Your decision not to participate or to withdraw from the study, will not affect your relationship with UNSW Sydney or Neuroscience Research Australia (NeuRA).

   The information you provide is personal information for the purposes of the Privacy and Personal Information Protection Act 1998 (NSW). You have the right of access to personal information held about you by NeuRA, the right to request correction and amendment of it, and the right to make a compliant about a breach of the Information Protection Principles as contained in the PPIP Act. Further information on how NeuRA protects personal information is available in the NeuRA privacy policy.

   What if I have a complaint or any concerns about the research study?

   If you have a complaint regarding any aspect of the study or the way it is being conducted, please contact the UNSW Human Ethics Coordinator:

   Complaints Contact

   Position	Human Research Ethics Coordinator
   Telephone	+61 2 9385 6222
   Email	humanethics@unsw.edu.au
   HC Reference Number	HC200108

9. What should I do if I have further questions about my involvement in the research study?

   The person you may need to contact will depend on the nature of your query. If you require further information regarding this study or if you have any problems which may be related to your involvement in the study, you can contact the following member/s of the research team:

   If you would like to receive a copy of the results you can let the research team know by inserting your email or mailing address in the consent form. We will only use these details to send you the results of the research.

   Research Team Contact

   Name	Dr Scherazad Kootar
   Position	Postdoctoral Fellow
   Telephone	+61 2 9399 1043
   Email	s.kootar@unsw.edu.au

   Research Team Contact

   Name	Prof. Kaarin Anstey
   Position	Scientia Professor (UNSW) and Senior Principal Research Scientist (NeuRA)
   Telephone	+61 2 9399 1019
   Email	k.anstey@unsw.edu.au