Protecting the UK’s investment in dementia research data and creating a sustainable route for continued access
The NDP Dementias Hub has brought together one of the UK’s most significant collections of dementia-relevant cohort, imaging, genomic and clinical research data. Developed through successive phases of Medical Research Council investment, the Dementias Hub has enabled researchers to discover, access and analyse complex datasets within a secure research environment.
Dementia, ageing and neurological disease
3M+ participants across population and clinical cohorts
Dedicated Hub within NDP
Full cost recovery
The resource includes longitudinal health and lifestyle information, cognitive assessments, imaging, genomics, biomarkers and other data relevant to dementia, ageing and neurological disease.
As DPUK moves into its next phase, the data resource and access capability are being sustained through NDP Dementias Hub — without making the continued availability of these datasets dependent on another programme grant.
The datasets
Its research community
Governance relationships
Specialist dementia capability
Shared infrastructure
Data management
Governance
Researcher support
Without continued investment, data become harder to access as:
Over many decades, participants have contributed health information, biological samples, imaging and other data to studies that follow individuals and communities over time.
These collections have historically been held across different universities, programmes and technical environments. Researchers have had to identify relevant studies, navigate separate application processes and work with datasets structured and documented in very different ways.
A sustainable national resource must make collections discoverable, maintain relationships with data providers, support different approval arrangements and provide the infrastructure to analyse large, complex datasets securely.
DPUK created a shared national Data Portal. NDP now provides a route to sustain and develop that capability for the future via its Dementias Hub.
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Bringing together cohort data collected across decades of UK research
Through DPUK1 and DPUK2 funding, the Dementias Hub established relationships with population cohorts, clinical studies and specialist research programmes across the UK and internationally — from established longitudinal cohorts to deeply phenotyped clinical collections, experimental medicine datasets and newer specialist studies.
This has enabled the Dementias Hub to build a substantial resource while respecting the distinct consent, governance and institutional requirements attached to individual datasets.
Studies can take part without every provider adopting the same governance model.
Held in the secure environment for approved onward use
The Portal facilitates access with the data provider
Received after approval for a single project
Providers can retain access decisions, delegate them under agreed criteria, or use the infrastructure for their own collaborations first.
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These datasets represent a significant investment by participants, cohort teams, funders and the dementia research community. Their value doesn’t end with the programme that funded them — it often grows as follow-up lengthens, new outcomes emerge and new methods for combining data develop.
Moving the DPUK Data Portal into NDP’s Dementias Hub provides a sustainable home for this legacy.
Data provider responsibilities. Control of each dataset continues to follow the agreements under which it was deposited.
The sustainability model. Routine access operates through full cost recovery, funding the specialist staff, infrastructure and governance beyond core programme funding.
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From data deposit to research access
Bringing data into a secure environment is only the beginning. Information from different studies varies considerably in structure, format, terminology and documentation.
Genomic and other high-volume datasets are managed through scalable storage and compute. Researchers can combine approved datasets or bring external data into their project where permissions allow.
Core preparation and documentation is done once and reused by multiple approved researchers — reducing repeated effort across projects.
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One consistent route into multiple collections, while preserving any additional requirements set by individual data providers.
The Cohort Matrix compares available data types; the Cohort Directory holds study and variable-level metadata. Specialist matrices cover imaging and genomics.
Describe the scientific question, datasets and variables required, proposed methods and anticipated public benefit.
Scientific and technical triage, then governance review. AI, machine learning, commercial or additional-data projects may need specialist review.
Once approvals and agreements are in place, NDP creates the research environment and makes the approved data available.
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The service operates through the Five Safes framework, within infrastructure holding ISO 27001 and Digital Economy Act accreditation. Access is limited to bona fide researchers at appropriate organisations, undertaking research with clear public benefit.
NDP manages onboarding, access agreements, project environments, IG support and monitoring. Outputs leave only after disclosure review.
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Researchers work through secure remote virtual desktops — participant-level data never reaches local devices. Windows or Linux environments are sized to the work, with HPC and scalable object storage for imaging, genomic and multimodal projects.
Bespoke environments can be built where studies need specialist software.
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Dementia develops through a complex interaction of biological, clinical, behavioural, environmental and social factors. A project might combine longitudinal cognitive and health data with brain imaging, genetics, biomarkers or linked health records.
Many collections hold whole-life, whole-body information — so the Hub also supports research beyond dementia with clear health-related public benefit.
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The Hub supports integration of approved external data and linkage to other health information through trusted matching and anonymisation services.
NDP is also developing federated approaches, so approved analyses can run across secure environments without routinely moving participant-level data — connecting the Hub with NHS, population and international resources.
Rather than maintaining separate infrastructure for one programme, the NDP Dementias Hub uses NDP’s shared platform and managed services — keeping a dedicated route for dementia-focused discovery and access.
Full cost recovery supports the staff time, storage, compute, governance and operational work each project needs, so access stays viable rather than relying on short-term research funding.
The Dementias Hub shows how NDP can protect and extend the value of a nationally significant research infrastructure — so the investment made by participants, cohorts and funders continues to generate scientific value.
Data available beyond funding periods
Providers retain control over access
One route into multiple collections
Complex data prepared and analysed securely
Expertise shared across programmes
Transparent, sustainable cost model
NDP sustains the infrastructure behind the data. The Dementias Hub can continue enabling dementia research.
Research data should not become inaccessible when a programme or grant comes to an end. Whether you need to sustain an established resource, bring together collections across organisations or create a secure route for continued access, NDP can provide a managed TRE Hub tailored to your requirements.
From deposit and curation through to discovery, governance, secure analysis and cost recovery.
