Pamela Brankin: Preventing dementia with European collaboration

DEMENTIA currently affects 46.8 million people worldwide and is estimated to cost the global economy £818 billion per year.

46.8 million people worldwide are affected by dementia. Picture: Contributed
46.8 million people worldwide are affected by dementia. Picture: Contributed

This number is predicted to rise significantly and by as early as 2017, there won’t be enough informal carers to look after those people requiring care. The early signs of Alzheimer’s disease are often present for up to twenty years before symptoms develop. Today’s patients are being treated too late and we need to do things differently.

So what can be done now to prevent the onset of Alzheimer’s dementia in today’s younger generation? A ground-breaking new research programme called the European Prevention of Alzheimer’s Dementia Consortium (EPAD) has been formed by 36 public and private sector organisations to bring together the most recent research, data and expertise to create new scientific knowledge aimed at reducing the number of patients with Alzheimer’s Dementia, delaying progression of the disease, and finding new solutions to it.

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We regularly tell our children to share and play nicely with others, but this has often proved difficult in the adult world of clinical research and healthcare delivery due to complexities including data sharing, geographical boundaries and regulatory issues. But now thanks to advances in cloud technology, the wide-scale EPAD collaboration is bringing us closer to finding answers.

EPAD’s approach is game-changing and will make a fundamental difference to our understanding and management of Alzheimer’s Dementia. It is only possible because of an unprecedented commitment to cooperation within a cloud-based collaborative data analysis environment. Teams from all over Europe are now using to the same platform to share data within a neutral workspace that has the ability to carry out advanced data analytics during complex trials.

Collaborative research

With six hubs throughout Europe and the UK, including one at the University of Edinburgh, EPAD brings together expertise of academics, pharma and public health professionals within the AnalytiXagility data analysis platform. This collaboration enables us to develop a better understanding of early stages of Alzheimer’s dementia and ways to prevent it from developing in people deemed to be ‘at-risk’.

The EPAD project is creating a virtual Europe-wide register of around 24,000 people who already participate in national and regional research studies, long-term cohorts or clinical registers.

From this Register, people across the probability-spectrum of developing Alzheimer’s dementia will be invited to join a research cohort. These people will participate in standardised tests and followed over time. Researchers hope studying these people will help them identify factors that contribute to the onset of clinical symptoms of dementia. The first person to sign up is right here in Edinburgh, consolidating Scotland’s already solid reputation in medical innovation.

1,500 of these participants will be offered a place in clinical trials using innovative drugs specially designed to prevent the disease.

Through this process we hope to understand how the disease develops as people age, before symptoms become visible. This will enable us to identify people most at risk and treat them early. This collaborative platform provides the model for all teams to work together to develop an understanding of the stages of dementia faster than we could independently, and, most importantly, determine the best treatment to stop it before it becomes too late.

The future of dementia

Through this collaboration, we hope we can more efficiently collect information on a broader scale to identify patterns and signs, before symptoms are evidenced. If we can identify these people sooner, we can close in on finding effective treatments to both prevent the onset of dementia and reduce the symptoms for people who are already diagnosed.

EPAD will bring us closer to understanding dementia and how to effectively treat it, enabling more people to lead fulfilling lives. Hopefully, this project will be seen in the not-too-distant future as a vital step in the fight against Alzheimer’s dementia.

• Pamela Brankin is the Head of Communications at Aridhia, who are part of the EPAD project team.