JDR Q&A Session
The JDR service is a new initiative that allows people to register their interest in dementia research and match them to suitable studies making it easier for researchers to find 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 the JDR.
Here we ask 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?
CR: 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.
JO’B: 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.
PE: 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.
Why did you enter your studies to the Join Dementia Research Service, and how has the service helped you as a researcher?
CR: We have both clinical and healthy volunteer studies on the JDR website. For the clinical studies, this allows us to ‘talk’ directly to the public about research without needing to have to ‘go through’ clinicians. For the Healthy Volunteer study (namely PREVENT), this allows us to connect with people who may have had no contact at all with clinical services about dementia. JDR helps us therefore access a willing, engaged and altruistic population that we would otherwise be less likely to connect to.
JO’B: I entered studies to benefit from the rapid, efficient recruitment that Join Dementia Research offers. By allowing potential participants to be linked more directly and quickly to our studies, it makes it much more likely that we will find suitable participants who wish to take part, meaning a much greater chance that our studies will successfully recruit to time and target.
PE: In the past, patients have been recruited via memory clinics, or by placing adverts in GP surgeries and the local press. Finding the right people has often been a lengthy and time-consuming process. JDR has been very helpful because people are effectively pre-screened. Patients go on and register their details to see if they match any study’s requirements – so you already know if they might be a good fit. It also provides us with people who are interested in research, so half the battle is over.
What difficulties are currently being faced in conducting dementia research?
CR: The four main difficulties in conducting dementia research in my view are; inefficient use of funds, recruitment, dissemination and not enough consideration of implementation. There have been recent attempts to build major infrastructures in the UK to help dementia research. This ensures that associated projects can avail themselves of facilities, data and knowledge without needing to build their own ideas from a standing start. Good ideas are worthless if the study cannot be conducted. Linking the great willingness and enthusiasm for research into dementia with the academics and investigators leading the projects will help achieve a dramatic reduction in failed studies, which fail not because of bad science, but because of bad execution and failure to recruit people.
JO’B: Research governance issues including ethical, regulatory and NHS Trust approvals have become increasingly complex and involved in recent years, necessitating a large amount of time from scientists and administrators. More particular to dementia research is the problem that some participants will lack the capacity to consent to studies, requiring the identification of an appropriate consultee to consult on their behalf. Moreover, many studies of cognitive impairment and dementia not only require participation of the subject themselves, but also the availability and willingness of a close friend or family member who can provide information and support to the participant, both in regard to ensuring their effective participation in the study, but also acting as an informant to provide key data regarding study outcomes.
PE: To demonstrate a change in biomarkers or cognitive function, large multicentre studies are essential. It is still a huge challenge to do large multicentre studies due to the lack of funding to ensure patients and carers could travel comfortably to and from research sites, the cost of novel scanning techniques, and other costs. The other challenges include the delays in regulatory approvals, and enough research sites with adequate staffing to conduct multicentre studies.
How important is it for the results of these trials to be published open access?
JO’B: It’s very important that all trials are publically registered, because of the well-known fact that negative studies tend to be published far less frequently than positive ones, leading to publication bias. Access to results of all studies once published is clearly important to researchers so that lessons from previous studies can be fully learned, sometimes allowing conclusions to be reached from multiple studies which weren’t possible from single studies alone.
PE: A significant amount of time, energy and money is spent on conducting research, and it is absolutely vital that the research and its findings are clearly communicated not only to the researchers, but also to the general public, as this will accelerate further scientific discovery, promote innovation and education, and benefits society. To ensure this happens, open access is the only way forward.
What areas of dementia research hold the most promise to improve dementia treatment and prevention in the future?
CR: There must be significant ongoing investment in prevention. Alzheimer’s dementia is a condition of late life but Alzheimer’s disease is a disease of mid-life. We must understand what the disease is doing in mid-life; how it starts, how it develops and how it manifests itself, to really be able to purposefully intervene at a public health and clinical level to modify the course of the disease in any given individual.
JO’B: Anti-amyloid therapies aimed at very early or even pre-symptomatic disease still hold tremendous promise. There are also treatments aimed at reducing the second main pathology in Alzheimer’s disease, tau or tangle pathology. Other approaches, such as tackling neuroinflammation, which may not just be an innocent bystander but pathophysiologically related to disease progression, are exciting areas under active exploration. Finally, although much effort naturally is being focused on very early stage disease at the early or even pre-symptomatic point, even effective disease modifiers are likely to reduce the prevalence of dementia rather than be able to totally prevent it. Consequently, much still needs to be done in symptomatic populations with dementia, to offer effective treatments for many of the neuropsychiatric and behavioural problems that may emerge during the course of different dementias – particularly as these problems are not only great sources of distress for patients but cause immense distress to carers and family members.
PE: The most promise will be from evaluating the role of inflammation in neurodegenerative diseases, where inflammation is driving amyloid precursor protein and tau formation. Equally, genetic and cardio-metabolic risk factors hold promise, and these will dominate the field in the next decade
Alzheimer’s Research & Therapy http://alzres.com/ is a major forum for translational research into Alzheimer’s disease. An international peer-reviewed journal, it publishes open access basic research with a translational focus, as well as clinical trials, research into drug discovery and development, and epidemiologic studies. All articles are made freely and permanently accessible online immediately upon publication, without subscription charges or registration barriers.