Abstract

The UK Dementias Platform (UKDP) is a radically new approach to dementias research, providing a highly efficient and cost-effective translation pipeline from basic discovery through to early phase trials (Fig 1). By combining the analytic and statistical power of >20 clinical and population cohorts representing 2M participants and creating a large readiness cohort, UKDP will create an optimal environment for basic discovery activities relevant to the clinical progression and human impact of dementia. Although UKDP is intended as a strategic and sustainable resource generating increasing scientific benefit over time, it will also deliver short and medium term benefits through the analysis of existing data, the enrichment of strategically selected cohorts, developing new ways of working with industry, and generating interest and further funding for dementias research generally. A single portal informatics hub (funded in stage 1) will be used for integrating data from participating cohorts and triangulating evidence between cohorts. The stage 2 proposal focuses on providing strategic resources for EM by enriching strategically selected cohorts, addressing key methodological issues and pump-priming a programme of EM studies. Further development of the platform is anticipated as the opportunities it provides are more widely understood. For example, predicated on the ability of the platform’s ability to provide accurately risk stratification, MRC and NIHR have recently funded a deep and frequent Phenotyping (DFP) feasibility study with a view to providing a further £5M for the full study. The DFP project may be considered a stage 3 development of UKDP and is an example of how UKDP can be used to leverage further resource for dementias research.

Aims

For the academic community, in addition to the proposals mad in stage 1, we will develop a network of partnerships and operate a system of working groups to actively consult the UK academic community and world experts on the direction, technologies and collaborations of the platform. Our aim is to 1) base the science of the platform on the best information available, 2) create momentum in dementias research by being inclusive of, and synergistic with, other initiatives.

For industry, partnership discussions are already underway with exchanges of ides, interests and needs between academic and industry stakeholders. Industry have identified their need for access to conversion (early MVI to dementia cohorts and for experimental medicine studies to conform to regulatory requirements.

We remain committed to raising the profile of contemporary debate about dementia and its treatment. We wish to encourage a culture of commitment to solving this problem. By increasing awareness at all levels of society we intend to leverage resources for the platform and for dementia research in general, to increase awareness of the need for earlier interventions and better targeted treatment in general by health service providers and the public alike.

Engagement with the general public and with patients and carers is a very important part of our mission. This serves not only to communicate our research findings and their relevance but also to address such issues as stigma in society and the research culture in the NHS in relation to dementia and older people. In addition to using the platform web-site to communicate to the general public, we will also liaise with charities and advocate groups such as Age UK and the Alzheimer’s Society to promote our work and findings and to engage them in shaping the work programme.

In addition we will have a dedicated free-phone number available 6 days a week and a communications officer at 50% FTE over 5 years whose responsibility is to develop and implement a communications and public engagement strategy.