Bringing together patients and researchers
The number of people with dementia is predicted to double over the next 30 years; improving current research will therefore become increasingly vital to understanding this condition and how best to treat it.
The Join Dementia Research service is a new initiative that allows people to register their interest in participating in dementia research and match them to suitable studies, in turn making it easier for researchers to find appropriate participants.
Recognising the importance of connecting people interested in aiding Alzheimer’s research with scientists in the field, Alzheimer’s Research & Therapy has begun a collaboration with Join dementia research.
Here, BioMed Central’s Neisha Jobanputra asks three researchers with studies involved with JDR – Craig Ritchie from the University of Edinburgh, Paul Edison from Imperial College London, and John O’Brien from the University of Cambridge – why they decided to join this service and how it will help overcome some of the current challenges facing dementia research.
What is the Join Dementia Research Service and why is this resource going to be useful for improving dementia research and treatment?
Craig Ritchie: Join Dementia Research is a telephone and online service that is supported by the National Institute of Health Research (NIHR), Alzheimer’s Society, Alzheimer’s Research UK and Alzheimer’s Scotland.
Its main aim is to connect the public with high quality dementia and neurodegenerative diseases research. It takes recruitment for research out of the clinic and into the public and that will ensure better recruitment to important studies as well as empowering patients, carers and others interested in helping the fight against dementia to make a significant contribution.
John O’Brien: Although many NHS services and research teams have previously held limited local lists of people interested in participating in research studies, this major initiative will, for the first time, allow people anywhere in the country to register their interest in dementia research, and to learn about studies that they may wish to take part in.
Join Dementia Research welcomes volunteers who have a diagnosis of dementia, whether Alzheimer’s disease, vascular dementia, Lewy body dementia, frontal dementia or another subtype, and also those with mild memory problems (mild cognitive impairment), as well as healthy people with no memory problems.
Paul Edison: JDR is an excellent way of recruiting patients, as it matches the study with appropriate patients. It’s an excellent source of volunteers.
Since the patients register their details on the JDR, researchers can access the data available on the JDR, and patients know about the ongoing studies and can express an interest in taking part.
So it brings the ideal patients closer to the researchers, ensuring appropriate patients get into suitable research studies.
JO’B: As the service builds, it will provide a unique large scale resource of volunteers interested in participating in future studies, many of which – especially in relation to prevention – are likely to require not just thousands but tens of thousands of people.
You can read the entire article on BioMed Central’s online magazine Biome here. To help us find out ways of not only treating dementia, but preventing it in the first place, please sign up with Join Dementia Research today!