Thanks to you,
EDoN is making fantastic progress.
Your generous support is helping to transform our work to detect and diagnose the diseases that cause dementia up to 10-15 years earlier than we can today.
Our Early Detection of Neurodegenerative diseases (EDoN) initiative brings together over 65 experts in data science, digital technology and neurodegeneration from across the world. Thanks to your funding, our expert EDoN teams have made great strides in 2021 and we’re excited to bring you the latest from the pioneering project.
Why EDoN is so important
Detecting diseases like Alzheimer’s when they first start in the brain is essential. It will unlock our ability to develop life-changing treatments and make sure they can be given as early as possible, when they will make the biggest difference on people’s lives.
EDoN’s Scientific Director Prof Zoe Kourtzi explains more:
Cutting-edge devices and data
EDoN’s success depends on collecting digital data from thousands of volunteers across the world. This digital data helps our scientists to understand subtle changes in everyday aspects of people’s lives, from how they sleep at night to how they interact with those around them.
Thanks to your support, 2021 has seen our Digital Hub hit a landmark milestone of collecting the very first data into the project.
To reach this point, they first reviewed over 140 digital devices on the market. They shortlisted four devices that collect the digital data they believe could provide the most valuable clues to early disease.
These devices make up our first ‘EDoN Toolkit’ to be used with our volunteers.
A headband collecting data on sleep and brain activity.
An activity tracker collecting data on physical activity, sleep and heart rate.
A smartphone app collecting data in the background about how people use their phones.
A smartphone app that gives people daily challenges to test their memory, thinking, speech, attention and dexterity.
How would you feel about using these devices?
Throughout the year, the Digital Hub has been working with around 20 volunteers to understand their views on using these devices.
During 2022, experts in the EDoN Digital Hub will be studying the data we collect from these devices, as well as tracking the latest science. This will help them to tweak and refine the devices in our Toolkit as the project develops.
Dr Chris Hinds, EDoN's Digital Hub lead, outlines his hopes for EDoN's digital Toolkit.
Volunteers at the heart of EDoN
Thanks to the hard work of EDoN’s Clinical Hub across 2021, there are already 17 volunteers from our Boston University cohort starting to use the devices.
We’re proud to be partnering with four large cohort studies to test the four devices in the first version of the EDoN Toolkit – two in Australia, one in the UK and one in the US.
Through these partnerships alone, we will collect digital data from hundreds of volunteers throughout 2022. And we’re actively discussing new partnerships with cohorts in Amsterdam and Barcelona to grow these numbers even further in the year ahead.
Prof Zuzana Walker, EDoN’s Clinical Hub lead, explains why volunteers are so critical to the project:
“I recently took part in EDoN to give my views on how easy the devices were to use. I’d never used a fitbit or headband so it took a day or two to get used to, but it was fun. In fact, it triggered a few family debates about some of the smartphone challenges! I’ve already used apps for other aspects of my health, like cardiac rehabilitation and for skin cancer, so it’s a great idea to bring this technology to dementia too. It feels to me that this approach will give much more information to doctors than a simple snapshot in time.”
Joanna, 52, living with mild cognitive impairment
Picking up patterns that change lives
Protecting volunteers’ data is vital. During 2021, our Analytics Hub has been building a secure research environment within The Alan Turing Institute that will allow our teams of expert scientists to securely analyse the digital data from volunteers.
As the first data starts to flow into EDoN throughout 2022, the work of the Analytics Hub will shift towards using cutting-edge machine learning approaches to spot patterns in the data.
Our aim is to identify unique patterns that can act as a ‘red flag’ that someone might be in the very early stage of a disease like Alzheimer’s or Parkinson’s disease.
Prof Richard Everson, who leads the EDoN Analytics Hub explains more about this process:
In November, we were pleased to bring key experts from EDoN’s Hubs together in London for a one-day meeting to share ideas, discuss progress and identify the key milestones for the year ahead. Everyone was incredibly excited about what the project can achieve and how we can break new ground to get there faster!
Why your support makes a difference
EDoN is an incredibly ambitious initiative bringing together experts from universities, technology companies and research projects from across the world. It’s the first project of its kind and your support has been essential to lay the groundwork for the project through 2021.
We are so grateful for your support for EDoN and your shared belief in a brighter future for people with dementia and their families.