All the personal information you have provided is managed in accordance with the Data Protection Act 2018. If you have any questions or concerns, or would like us to stop holding or using your data at any time, please let us know by phoning one of the charity helplines or emailing

Your personal information can only ever be seen by the people working to deliver the Join Dementia Research service:

  • Join Dementia Research staff
  • Approved researchers
  • Some NHS staff
  • Agencies working on behalf of Join Dementia Research
  • Charity helplines

We never share your data with anyone who hasn’t been through the relevant approval and training processes.

Your medical records

The information you provide us is separate to your medical records, which are kept by your GP or hospital consultant.

If researchers need information from your medical records to assess whether you are eligible for a study, they will only see information that is relevant to the study, and it is against the law for them to share this with anyone else.

For more detailed information about how we use your account information and keep it safe, please see the Volunteer Guide.