DPUK Great Minds and Clinical Studies Register
Research type
Research Database
IRAS ID
326652
Contact name
Ivan Koychev
Contact email
Research summary
DPUK Great Minds and Clinical Studies Register
REC name
South Central - Oxford C Research Ethics Committee
REC reference
23/SC/0134
Date of REC Opinion
2 Jun 2023
REC opinion
Favourable Opinion
Data collection arrangements
We are storing data that allows us to detect risk for worsening brain health and dementia. A part of the data comes from tests and measures taken in existing studies that are part of Dementias Platform UK. These include age, sex, ethnicity, history of medical conditions, cognitive (i.e. thinking and memory) tests and where available genetic, fluid biomarker and brain scan data. This is the extent of data stored in the CSR part of the Register. In the case of GMR, additional data is added by the participants in the Register through our website: they are asked to tell us if they have been diagnosed with dementia or other significant disorders and we give them short questionnaires to monitor their mood and anxiety symptoms. Participants are required to do a short cognitive test online. This collection of data directly from the participants through the website is repeated every 6 months. We offer participants to provide additional optional actigraphy-based activity data (actigraphs sent once every 6 months) and saliva samples for genetic testing. Finally, we are be asking studies recruiting participants through the Register to feed back any relevant information to ensure we keep the Register up-to-date.
Research programme
The Register supports the research community working on a better understanding and new treatments for dementia and improving brain health. The researchers range from those seeking to test new treatments (so-called clinical trials) to those looking to do studies in humans to understand mechanisms behind illnesses (so-called experimental medicine). The investigators come from universities as well as industrial partners. The value of the Register lies in the wealth of information held on its participants - basing study participation on existing measurements would allow studies to be much more informative of the risks for development of dementia. The Register also seeks to create a community of volunteers interested in dementia and brain health that can help steer researchers.
Research database title
DPUK Great Minds and Clinical Studies Register
Establishment organisation
University of Oxford
Establishment organisation address
c/o ORB Collections Governance Manager,
Nuffield Department of Surgical Sciences
Level 6, John Radcliffe Hospital
OX3 9DU