On the 16th June 2015, the Join Dementia Research consent wording was changed.

This was necessary to enable us to link to the Health & Social Care Information Centre (HSCIC), and excess mortality information. By linking to HSCIC we can ensure that deceased volunteers can be automatically removed, to save any potential upset that could be caused by research teams trying to contact volunteers who may have died.

The consent wording has changed from:

“I understand that the information held and maintained by the Health and Social Care Information Centre will be used to inform ‘Join dementia research’ in case of my death.”

to

“I understand that identifiable information such as name and date of birth will be provided to the Health and Social Care Information Centre and will be used to inform ‘Join dementia research’ in the case of my death.”

No action is required on your part, and you are not required to re-consent. However, if you are unhappy or if you have any questions please email manager.jdr@nihr.ac.uk or contact one of our helplines.