Today marks 10 years since Join Dementia Research began helping people take part in vital dementia research across the UK.

The service was set up on 24 February 2015 by Professor Martin Rossor and Adam Smith of the University College London (UCL) Institute of Neurology. 

Join Dementia Research enables people to register their interest in participating in dementia research and be matched to suitable studies. It’s run by the National Institute for Health and Care Research (NIHR) in partnership with Alzheimer Scotland, Alzheimer’s Research UK and Alzheimer’s Society.

Setting up the service

Professor Rossor explained: “The need for some sort of register for people wishing to take part in clinical trials was well recognised, although dementia and neurodegenerative diseases were particularly challenging. The intention was to match individuals to studies in real time using self-reported clinical and demographic data together with inclusion and exclusion criteria provided by investigators.

“An important principle of this approach was the empowerment of participants to choose which studies to explore further, and less dependent on the studies in their locality or solely those which are known to their clinician. Now volunteers can take part in many observational studies or questionnaires, as well as drug trials.

 “It is wonderful to see how Join Dementia Research has grown since 2015. We are now in a position to build on the Join Dementia Research platform. The original plan was to offer everyone access to Join Dementia Research at the time of diagnosis and to utilise health records to improve matching, which remains a target that Join Dementia Research is striving for.”

85,000+ volunteers registered, 700+ studies have used the service

In 1991, Professor Rossor was involved in discovering the first Alzheimer’s gene. Alongside Professor John Hardy, he uncovered the link between mutations of the amyloid precursor protein and Alzheimer’s. This has influenced much of the research into Alzheimer’s disease and dementia we see today. 

10 reasons to be hopeful

As we celebrate our 10th birthday, we want to reach out and thank every one of our volunteers. Your contributions and commitment are advancing dementia care, treatments and services. Over the next 2 weeks, we’ll be looking back at some of the more recent dementia research breakthroughs. We’ll also look ahead at 10 reasons to be hopeful for the future, thanks to the many thousands of volunteers who take part in research.

Log in to your Join Dementia Research account to check whether you have been invited to take part in a study. Or, if you are not already registered, sign up today.

Tomorrow, read the first in our series about 10 reasons to be hopeful, focused on Innovations in testing.