Documentation
Associated Media:
Description:
Join Dementia Research (JDR) is a UK-wide service designed to accelerate progress in dementia care and treatment by bridging the gap between volunteers and scientists. Launched in 2015, it acts as a "matchmaking" registry where members of the public can sign up to indicate their interest in participating in research.
Managed by the National Institute for Health and Care Research (NIHR), in partnership with Alzheimer’s Research UK, Alzheimer’s Society and Alzheimer Scotland the platform is open to any UK resident over 18 including those with dementia, their carers, and healthy volunteers. Representative accounts are also supported so those with consent, or lasting power of attorney can manage an account on someone else’s behalf.
What Data Does JDR Collect?
When a volunteer registers, they provide a profile consisting of approximately 18 mandatory and up to 30 optional data points. This information is the engine that drives the matching process and includes:
Demographics: Age, gender, ethnicity, and location.
Health Status: Details regarding a dementia diagnosis (type, date of diagnosis) or other existing health conditions.
Medication & Lifestyle: Current treatments and basic lifestyle factors.
Preferences: Whether they are willing to travel, participate in drug trials, or prefer online surveys.
As of May 2026, there are almost 100,000 volunteers registered on the service. Approximately 20% of volunteers have a dementia diagnosis or self-reported memory concern, 9% have recorded a specific dementia diagnosis.
Who can use the service?
We have extended the use of Join Dementia Research to all UK based, ethically approved dementia studies which are suitable to recruit from a register. Researchers can access service once they register, complete training and sign a Data Processing Agreement.
Volunteers will be matched to studies based on eligibility criteria set by the study research study and can be contacted via automated study notifications but additionally researchers will gain access to volunteer records and contact them directly.
Coverage
Spatial:
United Kingdom
Follow Up:
Continuous
Pathway:
Resgitration is voluntary and can be completed online, via postal form or
telephone.
Provenance
Origin
Purposes:
Disease registry
Temporal
Accrual Periodicity:
Continuous
Distribution Release Date:
25 February 2015
Start Date:
25 February 2015
Time Lag:
Variable
Accessibility
Access
Access Service:
Join Dementia Research is an online service and volunteer data is accessed
through the JDR portal. Access willl be provided upon review of study
suitability, that JDR is included in the ethically approved study documents, the
research organisation has signed a Data Sharing Agreement and the researcher has
signed up to the service Terms and Conditions.
Access Request Cost:
There is no cost associated with the service.
Delivery Lead Time:
1-2 weeks
Jurisdictions:
UK
Data Controller:
Department of Health and Social Care
Data Processor:
National Institute of Health and Care Research, Research Delivery Network
Coordinating Centre (via contract with University of Leeds).
Usage
Data Use Limitations:
General research use
Data Use Requirements:
- Project-specific restrictions
- Ethics approval required
- Geographical restrictions
- User-specific restriction
Format and Standards
Vocabulary Encoding Schemes:
LOCAL
Conforms To:
LOCAL
Languages:
en
Formats:
Individual volunteer data access