You can help researchers by joining our Trials Delivery Framework Repository!
About the Trials Delivery Framework Repository:
The DPUK Trials Delivery Framework Repository serves as a national register 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 Repository, individuals gain the opportunity to be contacted for future research studies within the Trials Delivery Framework that align with their suitability.
- 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 de-identified 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 Repository 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.
- Studies may contact you based on certain characteristics stored in the research database.
What happens if you join the Repository?
- 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 Repository 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 Repository is entirely optional, and your decision will not impact your medical care.
- All data collected will be de-identified to protect your privacy, and made accessible to researchers for scientific purposes.
How will your data be stored?
- All collected information is kept confidential and 'de-identified' and it cannot be linked back to you.
- 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 de-identified data will be shared with researchers from academic institutions and industry for approved scientific purposes.
Please contact us with any questions you may have by sending an email to: firstname.lastname@example.org.
Further details about the Repository can be found in the information sheet.