In plain English
Joining a research registry lets you contribute to UK dementia research and potentially access new treatments. Join Dementia Research is the national platform, free to register and used by around a quarter of UK dementia trial recruitment.
Why register
UK dementia research is active across prevention, early diagnosis, disease-modifying treatments and care. Several promising approaches are in late-stage trials. Wider participation accelerates progress; for individual participants, registry membership can offer:
- Early access to new treatments through clinical trials;
- Additional investigations and specialist input;
- Closer monitoring than routine care;
- Contribution to research that may help future generations;
- Compensation for time and travel.
Join Dementia Research
Join Dementia Research is the national platform run by the National Institute for Health and Care Research (NIHR) with the Alzheimer's Society, Alzheimer's Research UK and Alzheimer Scotland.
- Website: joindementiaresearch.nihr.ac.uk;
- Phone: 0300 222 1122;
- Free, confidential, no commitment;
- Around 60,000 people registered.
Registration takes 10 minutes online. Studies match your profile and contact details are passed to researchers; you decide whether to consider each study when contacted.
Who can register
The registry welcomes:
- People with a confirmed dementia diagnosis;
- People with Mild Cognitive Impairment;
- People at risk (family history, APOE4);
- Healthy adults of any age (for prevention and control studies);
- Family carers (for carer-focused research).
What participation involves
Studies vary widely. Common participation patterns:
- Online questionnaire: 20 minutes, one-off;
- Interview or focus group: 1 to 2 hours, occasionally;
- Observational cohort: annual assessment over years;
- Imaging study: MRI or PET scans, time-limited;
- Drug trial: regular visits (monthly to quarterly) over months to years, with randomisation, blood tests and imaging.
Other registries
- UK Clinical Trials Gateway: searchable register of UK studies;
- ClinicalTrials.gov: international register, searchable by location;
- Alzheimer's Research UK Dementia Research Roadmap: information on current research areas;
- Dementia Platform UK: large UK research infrastructure;
- UK Dementia Research Institute: a network of academic centres.
Specific research areas
Disease-modifying therapies
Next-generation anti-amyloid antibodies and anti-tau therapies in early Alzheimer's Disease.
Repurposed medicines
Trials of metabolic medicines (Empagliflozin, Semaglutide), anti-inflammatory medicines and others in cognitive decline.
Prevention
Multi-domain lifestyle prevention trials in at-risk populations.
Diagnostics
Blood-based biomarker studies, advanced imaging, digital cognitive measurement.
Care and quality of life
Carer support, non-pharmacological interventions, technology, environment.
What protections are in place
UK research is regulated:
- Medicines and Healthcare products Regulatory Agency (MHRA) for medicines and devices;
- Research Ethics Committees for all UK NHS research;
- Health Research Authority oversight;
- Detailed informed consent process;
- Right to withdraw at any time;
- Data protection under UK GDPR.
Should I register?
Reasons to consider registering include personal contribution to research, possible access to new treatments, and access to closer monitoring. Reasons to consider not registering include time commitment, risk of side effects in interventional trials, and possibility of receiving placebo. Discussion with family and your clinician helps clarify whether registry membership and specific studies suit you.
Frequently asked questions
Will I be obliged to take part in any study?
No. Registration is free and non-binding. When matched with a study, you choose whether to consider it.
Will I be paid?
Trials usually reimburse travel and time. Larger payments are not usual in NHS-based research.
Can someone with dementia take part?
Yes, with appropriate consent processes. Where capacity is impaired, family or attorney involvement under the Mental Capacity Act applies. Many studies actively recruit people with dementia.
Will my GP be informed?
Researchers usually inform your GP when you join a study, with your consent. Continuity of care is maintained.
Are trials safe?
UK trials are tightly regulated. Risks specific to interventional trials (such as ARIA in anti-amyloid antibody trials) are reviewed, disclosed and monitored. Observational and questionnaire studies carry minimal risk.
References
- Join Dementia Research. https://www.joindementiaresearch.nihr.ac.uk
- NIHR Clinical Research Network.
- Health Research Authority.
- Alzheimer's Research UK. https://www.alzheimersresearchuk.org