Join Dementia Research

Description of system

Join Dementia Research is a national service which allows members of the public to register their interest in taking part in dementia research studies. The service is not a research study itself, but matches interested volunteers with researchers who are seeking participants for their studies.

Join Dementia Research enables you to provide information about yourself so you can be matched to research studies that you may be eligible to participate in. If you match to a study, the researchers can then contact you to see whether you are eligible and if you’d like to take part. You have no obligation to take part in any study on Join Dementia Research.

The service is funded by the Department of Health and Social Care and delivered in partnership with the National Institute for Health Research (NIHR), Alzheimer Scotland, Alzheimer’s Research UK and Alzheimer’s Society.

JDR Learn Tool is aimed at healthcare professionals and provides a tool for them to find out more about JDR, how it works, and how they could help support the service and encourage patients to register.

Data governance

The Data Controller for Join Dementia Research is Department of Health and Social Care. This system is managed by NIHR CRNCC on behalf of the Data Controller.

The responsible manager within NIHR CRNCC for Join Dementia Research is the Director of Stakeholder Engagement and Communications

How NIHR CRNCC manage their data protection obligation

Use of JDR is governed by these Terms and Conditions which apply to all people who use it.

Consent is provided on registration and available for checking through the links on the home page.

How an individual's data is used is governed by a Privacy Notice.

If you are a healthcare professional using the JDR Learn Tool, please see the JDR Learn Tool Privacy Notice.

The position within JDR around accessibility is described in its Accessibility Statement.

ISO27001

CRNCC have a current ISO27001 certification, and provision of Join Dementia Research falls within the scope of this.

CRNCC review that the above controls are current and effective on at least an annual basis. This includes verification with DHSC as Data Controller.