Join Dementia Research (JDR)

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 the Department of Health and Social Care. This system is managed by NIHR RDNCC on behalf of the Data Controller.

 The responsible manager within NIHR RDNCC for Join Dementia Research is the Public Engagement Director.

 How NIHR RDNCC manages 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.

 We use cookies to make our website work and to improve user experience. Any information collected is stored as anonymous information. Some cookies are essential and we do not need to ask permission to use them. Third party websites set non-essential cookies and we cannot turn them off on the Join Dementia website, however, you can reject these additional cookies in your browser settings.  Information about cookies

ISO27001 and Cyber Essentials

RDNCC has  current ISO27001: 2022 and Cyber Essentials certifications, and provision of Join Dementia Research falls within the scope of this.   

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