The program for the event included presentations about the progress of the clinical study, the functional domains and modelling work, the RADAR-base data platform and the remote measurement devices used in the project, as well as the ethics and regulatory work done in RADAR-AD. In addition, members from Alzheimer Europe discussed the work on patient engagement in RADAR-AD and the activities of the Patient Advisory Board (PAB) appointed for the project. The PAB involves people with mild cognitive impairment, dementia (predominantly Alzheimer’s dementia) and their carers (e.g. family members and friends). The RADAR-AD PAB has been actively involved in several activities since the start of project in January 2019. You can find out more about the PAB members and their work here.
RADAR-AD’s project leaders Prof. Dag Aarsland (King’s College London) and Dr. Vaibhav Narayan (Johnson & Johnson) opened the meeting by welcoming everyone and reflecting on the progress of the project so far. They explained that RADAR-AD has managed to collect very useful data from its studies despite the challenges presented by the global COVID-19 pandemic. RADAR-AD has been successful in recruiting participants with a high retention rate and researchers are currently analysing the data set collected from the studies.
There are a lot of learnings that RADAR-AD can share with other projects and stakeholders. We have been receiving interest from industrial and academic partners with regards to our results. This points to the importance of the digital era in Alzheimer’s research. Our goal is to improve clinical trials for Alzheimer’s disease but ultimately we aim to improve the lives of those affected by Alzheimer’s and their families.
At the meeting Jayne Goodrick, member of the RADAR-AD Patient Advisory Board (PAB) shared her experience with Alzheimer’s disease (AD) and dementia. Jayne is a carer for her husband – Chris Roberts, who is also a member of the RADAR-AD PAB and has been diagnosed with mixed dementia – vascular and Alzheimer’s.
When a diagnosis of dementia is given, it is given to the whole family. We walked into the consultation room as a husband and wife, but walked out of it as a patient and carer. That is what the diagnosis does – it changes you and it changes the whole dynamics in the family.
Jayne and her husband Chris became involved with RADAR-AD through Alzheimer Europe and the European Working Group of People with Dementia: “We were approached by RADAR-AD researchers at the very start of the project to share our thoughts on the research and the technology used. This was very refreshing as very often we get asked what we think of the design and methods researchers have already decided to use in their projects. By then it is too late to give such feedback. If they are lucky, they had it right from the beginning. If not, it is too late to change things. That leaves everyone disappointed as it is a lost opportunity”.
Jayne explains that this is not what happened in RADAR-AD as RADAR-AD researchers involved PAB members at the very start: “RADAR-AD researchers came with clear explanations and discussed with us the types of wearables that are most appropriate to use. They really listened to us and the feedback we gave. Some of this feedback must have helped the retention rates in the study since these are above average. Researchers showed respect to us for being part of the team. This way we feel more valued and they get more out of us as well!”
Jayne believes that remote assessment of disease and relapse can have many applications. The main one is that of early diagnosis. Capturing relapse early is also crucial – early intervention is key since there are signs of disease progression which are less obvious to the person and their family around them. This can helps to prevent misdiagnosis. Early diagnosis can also inform early on when the person is advancing in their disease and intervention is required: “What really excites me about RADAR-AD’s research is this potential for early interventions. If a particular difficulty in the daily living of a person with Alzheimer’s is highlighted, the family can take control and put a strategy in place. This will help us make sure the person with Alzheimer’s remains independent and maintains their dignity for as long as possible. With dementia it is massively important to let the people with the diagnosis do as much as they can for as long as they can before things become more challenging for them.”
Jayne’s moving speech received compliments by the project leaders and a virtual round of applause by all consortium members: “Thank you for this amazing speech, Jayne! Indeed, the whole point of the technology used in RADAR-AD is to assess what is challenging in a person’s life and even though the underlying disease progresses, to find a way to improve function and make a real difference in their life. This is the biggest motivator to us all!” – Dr. Vaibhav Narayan (Johnson & Johnson)
At the 2022 annual meeting RADAR-AD researchers presented their activities from the previous year as well as future plans in the areas of ethics, functional domains and modelling, the devices and platform used in RADAR-AD and the clinical study.
RADAR-AD’s technical team reported that the RADAR-base platform is receiving more and more data from the 143 participants enrolled in the main RADAR-AD study, the 23 participants that have completed the tier 2 sub-study and the 40 participants enrolled in the tier 3 smart home study. The clinical team reported relatively low drop-out rates and shared future plans for data analysis and publication of results.
Another topic discussed at the meeting was RADAR-AD’s regulatory work. As an exploratory study RADAR-AD seeks advice from organisations such as the European Medicines Agency (EMA) and institutions providing Health Technology Assessment (HTA) on the use of remote monitoring technologies (RMTs) in the study as well as on the results from the study, their potential use and follow-up research. The EMA decides if a new medical treatment is allowed for market use and HTA organizations assess whether the benefits on quality of people’s lives outweigh the costs to develop and use such a treatment. The regulatory work stream in RADAR-AD will take the feedback gathered from these organisations and combine it with the insights obtained from RADAR-AD’s PAB to create a plan for using RMTs in collecting relevant information for Alzheimer’s disease.
This article was originally posted on: https://www.radar-ad.org/newsroom/third-annual-consortium-meeting-gathers-over-50-radar-ad-project-members-online-discuss