Last review date: November 2022

Managing your information in your Join Dementia Research account

You can manage your Join Dementia Research account information at any time by logging into the website with your username/email address and password.

In your account you can:

  • Update your personal information, including your name, contact information and information pertaining to your health
  • Manage your contact preferences, such as whether you want to receive study alert notifications, our newsletters and how researchers should contact you
  • Update your password, email address and security questions
  • Indicate preferences for particular studies
  • Delete your account

You can also ask us to make for these changes for you by contacting us at any time.

What happens when my account is deleted?

Once your account is deleted from the Join Dementia Research, all of your personal information recorded in it is permanently removed from the Join Dementia Research database. You will no longer be able to access your account and will not be contacted or matched to research studies.

While all of your personal data is deleted upon deletion of your account, an audit log of some of your interactions with the service, such as account logins will be retained as anonymous data. This is to ensure we can identify and fix bugs to the website, and that we retain an anonymous record of the service we have provided for reporting purposes.

Information in the audit log cannot be used to create another account. Where a volunteer participates in a study, their information will be held by that study team, and will be kept in accordance with the relevant legislation.

We will also keep an anonymised tally of your research participation. This will record how many people have participated in research as a result of being part of Join Dementia Research.

Where will my data be stored?

Please read our Privacy Notice for details about data storage and processing on Join Dementia Research.

Will my personal data be passed on to other third parties?

Please read our Privacy Notice for details of how your personal data is processed and shared.

What happens to my personal data if I die?

When registering with Join Dementia Research you provide consent for your account to be deleted if you pass away.

If we receive notification from a member of the volunteer’s family or a researcher that an individual has died we will delete the account as soon as possible.

We contact NHS Digital approximately twice a year, Public Health Scotland annually and the Northern Ireland General Registry Office every two to three years, to identify volunteers who are deceased across England and Wales, Scotland and Northern Ireland respectively. We share basic personal information about volunteers in a secure way with these organisations in order to carry out a search. Once the search is carried out, the information shared and the accounts and all personal information of deceased volunteers are deleted.

If we are not notified of a person passing away by the processes described above, the volunteer’s record, and that of any associated representative, may be retained.