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\r\nYou can choose which dementia studies interest you, which additional tests you'd be willing to take and how we should contact you. We'll then match you with a relevant study. These will be selected from a group of studies screened by the Great Minds.
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\r\nSome people find completing questionnaires on mood and anxiety or memory testing distressing. If you are affected we have a helpline (01865 613113) that operates from 9 am to 5 pm Monday to Friday or you can contact your GP or NHS Direct on 111 for advice.
\r\nEach different study or trial you may be invited to join will have information about any risks specific to the study. Before you join a trial the researcher will give you full information, including any risks so you can decide whether you wish to take part.
\r\nWhen researchers review Great Minds member data they will select participants based the level of risk of developing dementia in the future. Great Minds will not share with your information about your level of risk of developing dementia.
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\r\nYou will not be reimbursed for joining Great Minds. Individual studies may have different procedures for reimbursing costs depending on the study's duration and level of inconvenience.
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\r\nWe will publish findings in journals and present papers at conferences. The studies you choose to join will tell you how they will release their results before you join their study.
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\r\nBy joining Great Minds you may become involved in a number of different, ethically approved, research studies. Many people enjoy the research experience and contact with research teams.
\r\nTaking part in a research may not directly benefit to you, but it will improve our understanding of the development of dementia and help us fast-track prevention and treatments.
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\r\nAll studies involved with Great Minds will have been approved by a Research Ethics Committee. This means that they have been reviewed to make sure that they protect the rights, safety and wellbeing of people involved in research.
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\r\nWe intend to match our volunteers to relevant studies as they are approved. Studies will be selecting volunteers based on specific criteria so we cannot guarantee a timescale of each volunteer. We will be in regular contact with news about Great Minds and reminders to complete your regular tests. The more up-to-date you information is, the easier it will be for researchers to link you to a study.
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Academic and industry partners are the driving force behind developing Great Minds, as it enables them to innovate trials and medical studies. In order to test the newest ideas, researchers in academia and the pharmaceutical industry are working in close collaboration. This enables more rapid identification of drug targets, facilitates drug discovery and provides innovation in clinical trial design.
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Participation in the Great Minds is confidential. We will only share your data with studies you've agreed to take part in. Your data may be used for monitoring and/or auditing of the study to ensure that the research is complying with applicable regulations.
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\r\nWhen researchers use our website they use the Great Minds feasibility tool to check if there are enough people who fit their study criteria. This only shows researchers anonymised data and will not give them any information that identifies individuals. If Great Minds invites you to join a clinical trial and you agree, Great Minds will give the trial researchers more detailed information \u2013 including your contact information.
We won't notify your GP that you have joined Great Minds or contact them about the information you provide when you register. If you are concerned about your memory or anxiety levels we recommend that you contact your GP.\u00a0
\nGreat Minds holds data securely on DPUK\u2019s IT infrastructure. This uses the MRC-supported UK Secure e-Research Platform (UKSeRP) and operates under the highest accredited Information Security Management System (ISMS). Members' names and contact details are held in an encrypted database hosted by UKSeRP and all data and backups remain within UKSeRP secure infrastructure.
\r\nCambridge Cognition and Mezurio provide online and smartphone-based memory and mood assessments for Great Minds. The online memory and mood data is \u2018pseudoanonymised\u2019, which means that members' names are replaced by numeric codes so that the data is non-identifiable, before it is stored on their secure servers. Data collected by Mezurio will be encrypted and sent to a secure server within the University of Oxford Big Data Institute, maintained at a standard suitable for GDPR compliant clinical trials. Cambridge Cognition are part of the secure UKSeRP secure infrastructure.
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Discussion groups with research volunteers revealed that participants and public were positive about being contacted about new research opportunities. We also learned some important things for us to consider, and this has helped shape how this contact should be made. We have followed this advice in the creation of the Great Minds.
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\r\nParticipation in the Great Minds is voluntary and you can leave any time. You can let us know you want to leave through our website or contacting us directly. We will delete all your identifiable data and you can request that we delete any study data collected up to the time you leave.
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\r\nIf you wish to complain about any aspect of this study, contact Ivan Koychev or his study team on 01865 613113 or by emailing greatminds@psych.ox.ac.uk. Or you can contact the University of Oxford Clinical Trials and Research Governance (CTRG) office on 01865 572224 or email ctrg@admin.ox.ac.uk. The University of Oxford, as Sponsor, has insurance in place in the unlikely event that harm is caused as a direct consequence of participation in the Great Minds.
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\r\nPlease contact Ivan Koychev or his study team on 01865 613113 or by emailing greatminds@psych.ox.ac.uk.
When you register you will be asked a few questions about your health and well-being. These questions take about 5 - 10 minutes to complete. We will also ask you to complete an assessment of your memory. This may take 10 - 15 mins to complete.\u00a0 Every six months we will ask you to repeat these questionnaires and assessments.
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