Help researchers - join our Trials Delivery Framework Register!
About the Trials Delivery Framework Register
The DPUK Trials Delivery Framework Register serves as a national repository of valuable information, including memory scores, clinical history, brain scan results, and medications, collected from local research registers at patients' local sites. By agreeing to place their data in the Register, individuals gain the opportunity to be contacted for future research studies within the Trials Delivery Framework that align with their suitability.
Aims:
- Give patients the best opportunity to take part in research studies.
- Provide doctors with the highest quality information to make more accurate and earlier diagnoses.
- Grant researchers controlled access to research data from a large number of people.
What to expect if you join
Your regular test results and medical information will be stored in the Trials Delivery Framework Register database on the DPUK Data Portal.
Data will be stored without your name or any identifying information.
You can choose to receive information about developments in brain health and dementia research.
You will be offered the opportunity to complete an optional, easy-to-use at-home genetic test.
Your local site may contact you about studies based on certain characteristics stored in the research database.
What happens if you join the Register?
- Your regular test results and medical information will be securely stored in the research database on the DPUK Data Portal, ensuring confidentiality and anonymity.
- By participating, you actively contribute to cutting-edge brain health and dementia research and aid researchers in recruiting participants for vital studies and trials.
- While your participation in the Register may not yield immediate personal benefits, it will significantly contribute to advance the knowledge about dementia and potential future treatments, with the ultimate aim of preventing dementia.
- Joining the DPUK Trials Delivery Framework Register is entirely optional, and your decision will not impact your medical care.
- We will protect the privacy of all participants when making collected data accessible to researchers for scientific purposes.
How will your data be stored?
- All collected information is kept confidential and cannot be linked back to a participant to protect their privacy.
- Some studies may contact you based on stored characteristics, through your DPUK Trials Delivery Framework site.
- You can decide if you want to take part in any study that you are offered.
- Your data will be shared with researchers at academic institutions and industry for approved scientific purposes in a form that does not identify you.
- Your genetic data (if applicable) will be stored along with other data and cannot be traced back to you. Your saliva sample will be destroyed after it is analysed.
Please contact us with any questions you may have by sending an email to: [email protected].
Further details about the Register can be found in the information sheet.
TDF Register – Prof. Vanessa Raymont (CI) – Website – v1.1 14/06/2024 – IRAS Project ID: 331044 - REC Reference: 24/LO/0433