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Watch Dr Ivan Koychev explain how the Clinical Studies Register (CSR) will work.

Why we don’t have a cure for dementia yet

Unlike many other degenerative diseases such as cancer, in which there have been dramatic advances in the development of new treatments, there has been frustratingly little progress in terms of the development of new treatments for dementia. Researchers now think our best chance of treating Alzheimer’s is at its very earliest stages, and one of the biggest problems they face is finding and treating people who may be in the first phases of the disease. For up to 15 years before the first symptoms show, people with Alzheimer’s disease may appear completely healthy but inside the brain, the seeds of damage are being sown. We need to find these people so we can treat them with drugs that work, but before we can do that, we need to find them, and the only way to learn how to spot them is through healthy volunteers taking part in clinical trials.

Trials are an important part in the development of any treatment but they are expensive if they fail. Failed trials cause companies to close their dementia drug development programmes, as we’ve seen with Pfizer recently. Pharmaceutical companies cannot afford billion dollar losses, universities cannot make drugs without pharmaceutical companies, and none of us can afford to give up on finding treatment for dementia. We need a new way.

How DPUK can help to find the right people for clinical trials

Inviting the right people to take part in appropriate clinical trials for them is a critical step in the development of effective treatment for dementia.

Those people who volunteer as participants in long-term medical research studies, known as ‘cohort studies’, are in a special position to help here. DPUK, as the organisation which is bringing together these studies into a powerful and unique data resource of over 2m individual records, is in a very special position in being able to facilitate this.

Over many years, the participants in ‘cohort’ studies have taken part in a variety of tests, offering scientists a huge amount of data on their lifestyle, cognitive abilities, genetics, and other biological information, in some cases going back to early childhood. All of this data is exactly what companies developing new treatment so desperately need to give clinical trials the best chance of success. Having data that goes back years allows researchers to work out each individual participant’s trajectory and so will allow them to select the right people to join studies, as well as increase the likelihood that any effects from newly developed treatments are picked up.

How will it work

Participants in DPUK's existing population studies, known as cohorts, will be offered the chance to join the Clinical Studies Register. Those that agree will be directed to a new website (now in development) which will allow them to submit their contact preferences and medical information, as well as complete cognitive tests such as memory tests. Researchers will then be able to use the register to find the people best suited to their trials of new treatments.

We know that many of the participants in cohort studies give up their time to help further medical research, to support the development of new treatments for terminal and devastating conditions like dementia. That’s why, by inviting these participants to join a register of people willing to be contacted to take part in specialised or ‘targeted’ trials of future treatments, we are helping them to help join us in our fight for a cure for dementia.