Connect-D: Dementia Data Platform

Lay Description

Aims:

To establish a harmonised registry of deidentified data on individuals with dementia within participating SDEs, with which multiple types of studies could be supported, for example:

• Determining patient eligibility for trials across the region
• Supporting Health Technology Assessments (HTAs) by examining the health and financial impacts of new drug indications or diagnostic technologies for dementia
• Measuring the preventative impact of dementia vaccines through observational studies

Methodology:

Within each participating SDE, a dementia registry will be established by hosting data from sites across multiple care tiers. Patients will be included via dementia diagnoses recorded by GPs in alignment with the national Primary Care Dementia Dataset (PCDD), and via community/mental health care data.

While each SDE will construct its own dataset to protect patient personally identifiable information (PII), database structure will be harmonised across the network to streamline study feasibility queries (e.g. cohort counts via the application of inclusion/exclusion criteria) to be executed in a federated fashion before counts are aggregated.

When a new and suitable Connect-D study requiring dementia data is approved according to standard SDE governance, SDEs within the Connect-D network will be invited to participate. If technically feasible and approved at SDE DACs, relevant ‘cuts’ of dementia data (as justified by the approved study protocol/Data Access Request Form) will be linked, pseudonymised, and transferred to a named host SDE with capability to provide a Trusted Research Environment (TRE) to the research group. In this way, each SDE will only share de-identified data with other SDEs.

Data linkage will comprise safe, encrypted techniques according to national SDE standards and agreed regionally – for example using a trusted 3rd party NHS key holder (such as an ICB) to distribute unique SHA-256 salts to each collaborating SDE, facilitating linkage.

Public Benefit Statement

Dementia is consistently reported as the leading cause of death in the UK and a major driver of morbidity, with an estimated financial burden of £42 billion and over 1 million people expected to be living with the disease by 2030.

This project will establish a scalable, reusable infrastructure for dementia research across the participating SDE network. By enabling federated cohort discovery and streamlined data flows into a TRE, it will support observational dementia research, including studies of disease trajectories, treatment patterns, outcomes, and the preventative impact of vaccines and other public health interventions.

For patients and clinicians, the registry will improve the identification of populations who may be eligible for clinical trials and other studies of new diagnostics and therapies, helping to widen and speed up access to innovative technologies. For the NHS, it will provide a consistent, real-world evidence base to inform Health Technology Appraisals, pathway redesign, and resource planning.

Over time, the harmonised design and governance model can serve as the foundation for a national dementia registry, enabling robust monitoring of variation in care and outcomes, supporting efforts to reduce inequalities, and strengthening the evidence available to policymakers and professional bodies.