Cookies on this website
We use cookies to ensure that we give you the best experience on our website. If you click 'Continue' we'll assume that you are happy to receive all cookies and you won't see this message again. Click 'Find out more' for information on how to change your cookie settings.
Skip to main content

About Great Minds

The Great Minds is a group for volunteers from other health studies, interested in research and being matched with clinical trials to fast-track early diagnosis and treatments for dementia.

The aim of the Great Minds is to speed the discovery of a cure for dementia by precision-matching volunteers with innovative clinical trials and medical research.

We believe we can take years off trials and develop early therapies for dementia by matching pre-screened volunteers with experimental medicine studies.

Great Minds is part of the Dementias Platform UK (DPUK) family, a multi-million pound public-private partnership which launched in 2014. DPUK is directed by Professor John Gallacher (University of Oxford) and is supported by an executive team of ten other representatives from our academic and industry partners.

All medical research is reviewed by an independent group, called a Research Ethics Committee, to protect participants' interests. This study has been reviewed by the Oxford C NHS Research Ethics Committee.

 

We would advise anyone who has a concern about their memory to discuss this with their GP. Many of us find that our memory becomes less reliable as we get older and it can be a symptom of a number of conditions.

There are four steps to joining Great Minds and it only takes few minutes to complete the basic information.

1. Join as a member - You'll set up a username and password which you use to login each time you visit.
2. Tell us about yourself - Share your contact details and let us know about health as well as mood and anxiety levels
3. Take our brain health tests - These are simple tests of your memory on your computer and smartphone (if you have one)
4. ...visit regularly and repeat the tests – We'd like you to come back every six months and repeat the tests – we'll email you a reminder.

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.

Clinical trials

In the race to find treatments for dementia, researchers require volunteers on a range of different studies. Some studies are observational studies looking to understand cause-and-effect relationships. Others are experimental medicine, which investigate the mechanisms that cause the disease or evidence of the validity of experimental treatments. There are also clinical trials where volunteers are offering an intervention to evaluate the effects on health outcomes.

All studies Great Minds offer have ethical approval. This means they have been checked to make sure they protect the rights, safety and wellbeing of the people involved.

 

 

 

You 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.

 

 

 

Some 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.

Each 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.

When 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.

 

 

You 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.

 

 

 

We 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.

 

 

 

By 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.

Taking 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.

 

 

All 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.

 

We 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.

 

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.

 

Joining Great Minds

We're looking for volunteers, over the age of 18, who have been involved in previous medical studies to join Great Minds. If you have been invited to join Great Minds, you have participated in a previous study. If you are part of a health study and haven't been invited yet, we hope to invite you soon.

You are not under any obligation to join, Great Minds members volunteer to take part in trials.

 

Joining is simple, quick and secure – just visit our [registration page] and it will take you through step by step. To join you will need to provide basic information including name, date of birth and contact details. You'll also be asked for medical information, such as health problems.

 

When you join you create an online account. After you have registered with your background information you'll be asked to complete regular tests of memory and mood. These are online tests and you won't need to visit a study centre.

There are a couple of online tests to complete. One measures your short-term memory, the other two mood questionnaire are commonly used by clinicians and researchers to screen for mood and anxiety problems. You will not be given feedback on how you performed on your online tests.

If you have a smartphone we have a third memory and thinking test. Over a six day period you'll be asked to complete a selection of daily tasks on our app – each lasting around 8 minutes. For as long as you agree to participate with Great Minds, every six months we'll ask you to complete the online memory tests and mood questionnaires and repeat the smart app test for 14 days in a row.

It doesn't cost anything to join Great Minds.

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.  Every six months we will ask you to repeat these questionnaires and assessments.

Other

 

We will only find treatments for dementia through research and clinical trials. Research needs volunteers living with dementia and memory problems, and those who are not. At Great Minds we are focusing on volunteers from other health studies because they have a wealth of data that researchers can use in developing early treatments. Our volunteers are incredibly valuable because there are currently so few with this wealth of health data that are part of dementia research.

 

You 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.

 

 

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.

 

Participation 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.

 

If 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.

 

Please contact Ivan Koychev or his study team on 01865 613113 or by emailing greatminds@psych.ox.ac.uk.

Protecting your information and data

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.

 

When 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 – 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. 

Great Minds holds data securely on DPUK’s 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.

Cambridge Cognition and Mezurio provide online and smartphone-based memory and mood assessments for Great Minds. The online memory and mood data is ‘pseudoanonymised’, 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.

 

Setting your preferences

Once you have signed up, you will be taken to your member area where you can update your profile information, contact preferences, change your password or leave the study.

 

 

 

When you login in follow the link to reset your password. You will be asked to enter the email address you signed up with and then sent a link to create a new password.

 

 

When you registered we emailed an email verification – if you have not received this please check your junk or spam folder. If the email still can't be found, please contact our technical team in Swansea - helpdesk@chi.swan.ac.uk.

 

 

When you login in follow the link to reset your password. If you can't remember the email address you used to register with, we will ask you to answer the security questions you set up when you first registered.

 

 

 

We will email you every six months with reminders to come back and complete the tests.