New developments in big, open access data for dementia

Dementia research is firmly on the political agenda and Imperial is driving forward initiatives to make data bigger, more informative and open to all.

Today the Prime Minister, David Cameron, pledged a UK commitment to discover new drugs and treatment that could slow down the on-set of dementia or even deliver a cure by 2025. This was aligned with the official launch of the MRC’s UK Dementias Research Platform (UKDP) announced by Secretary of State for Health, Jeremy Hunt, at the first Global Dementia Legacy Event held in London.

Imperial College London researchers are heavily involved in the UKDP big data initiative, which joins together ongoing studies across the UK to provide a research population approaching nearly 2 million people. They are also playing an important role in the largest of the contributing studies – the UK Biobank - which has recently started collecting imaging data on 100,000 participants, including scans of brains, hearts, bones and blood vessels.

Data from UK Biobank will be open access, allowing researchers from anywhere within the UK to tap into this vast resource. When possible, data from other studies in the UKDP will also will be made open access, promising a uniquely powerful way of enabling new discovery.  

Dr Craig Ritchie from the Department of Medicine, Imperial College London who is on the UKDP steering committee said: “This really is a game changer in dementia research and will be a phenomenal resource to answer the big questions. It will enable the research community to move seamlessly between different levels of data, which simply could not happen if we worked in our own separate research groups and areas. By involving major players in the pharmaceutical and biotechnology industries, the platform will accelerate discovery of new treatments and interventions and allow the UK to take a leading role in the design and delivery of programmes to stop the progression of dementia.”

The UKDP is a public-private partnership that brings together top academic knowledge and cutting-edge technologies. The 22 studies that fall under its information umbrella will provide a research population approaching nearly 2 million people to evaluate dementia risk.  Bringing this data together will allow researchers to scale up individual studies to explore their significance in larger populations, and also to drill down into more specific data that is only available in smaller samples. For example, if researchers want to investigate dietary links to dementia at a population level they can investigate the biologically possibility of this in a smaller study with specific genetic data.

Amongst the 22 studies are the Imperial College London CHARIOT project (Cognitive Health in Ageing Register: Investigational, Observational and Trial studies in dementia research) which is a register of over 20,000 elderly people and  PREVENT  which is an ambitious pilot project into mid-life to try to identify biological markers of the disease.

The UK Biobank will be the largest project under the new UKDP data umbrella. This was launched to collect a range of health data on 500,000 people. One of its several goals is to understand the course of Alzheimer’s over time. In May, the UK Biobank launched the world’s most ambitious research imaging programme that will collect brain, heart, blood vessel and bone scans from 100,000 participants.  Scanning has begun in a single centre that is rapidly increasing its numbers, setting the ambitious goal of performing 18 full sets of scans and associated clinical examinations per day by September.

Reconstruction of the millions of observable white fibre bundles in the brain

From the beginning of this ambitious project, researchers from Imperial College London have been involved in planning and translating the UK Biobank and its Imaging Enhancement from initial concept to current reality. Professor Paul Matthews Head of the Division of Brain Sciences in Department of Medicine at Imperial College London chairs the Imaging Working Group of the UK Biobank that initiated this recent addition to the observational studies. Several additional investigators from Imperial and other universities have developed the protocols for the different types of scan to ensure the data is correctly collected, stored and able to be shared.

“The Biobank promises to bring a new level of understanding to the risk of later life disease such as dementia,” says Professor Matthews. “It also shows the scientific community working together to address big challenges to answer important questions. No one will have special access to this rich dataset, although the many scientists volunteering their time to support the project are ensuring that it is truly ‘state of the art’. From the start, Imperial researchers have driven its development, moving it from a simple concept to the huge resource it will become in the near future. We are committed to this new scientific environment where open data creates a space for greater innovation and faster translation into treatment.”

Collaboration and knowledge-sharing is at the heart of these initiatives. Imperial College London is keen to open its doors further to this exciting new development in dementia research. It hosts the national Parkinson’s Disease Society brain bank and the MRC-NIHR National Phenome Centre, which helps provide a basis for evaluating the phenomes (combination of physical and personal traits) that are important in dementia. The recently launched Imperial Data Science Institute is also committed to exploring important questions around healthcare strategy and particularly dementia.

Consultant psychiatrist and Co-Director of the Neuroepidemiology and Ageing Research Department at Imperial College London, Dr Robert Perneczky said: “The UKDP and the UK Biobank will contribute significantly to developing treatments and interventions for dementia. We still don’t really understand the disease and this is why there are currently no viable treatments. By collecting and amassing data at a population level we can bridge this knowledge gap by tracing progression of the disease, identifying markers that can indicate onset, and discovering new treatments and interventions that can be applied as early as possible. By using big data and opening it up to innovation we can now start to take big steps towards preventing and halting dementia.”