Early Detection of FTD (EDoF) is an initiative that uses digital devices to detect and measure early signs of FTD. By combining everyday technology with innovative new tools, we can now track subtle changes in people’s health more frequently and precisely, even from the comfort of their own homes. These digital technologies can provide insight into many different areas, including cognition, language, physical activity, and motor function. Together, these measurements can offer a more complete picture of how FTD develops and progresses.
Ignite
Ignite is an iPad-based app, developed by our team. It has been through several stages of development, including testing with over 2,000 healthy participants! This app assesses cognition in people with or at-risk of FTD. Using 12 different tasks. Ignite allows us to measure executive function, social cognition, semantic knowledge, visuospatial skills, and arithmetic, by measuring details like accuracy and reaction times. The app is currently available in 9 languages and used across GENFI sites. A recent development is the second version of Ignite (Ignite+), which is now in the testing phase and includes two new tasks!
Mobile Eye-Tracking
Eye-tracking is the process of capturing eye movements to determine where a person is looking and get insight into their behaviour and cognition. In the past, this required large, fixed equipment but a more portable and accessible version is now used by our team. This lightweight eye-tracker can be attached to a tablet, making it much easier to carry out assessments. The data collected helps researchers explore aspects such as emotion recognition.
Fitbit (and the newly introduced Oura Ring!)
You have probably heard of the smartwatch Fitbit, or you might even own one yourself. It contains several sensors that track physical activity, sleep, heart rate, and more. What makes it especially useful is that it does all of this through passive monitoring, collecting data in the background of your everyday life. Fitbits have been used in the GENFI study for several years, and we have recently begun testing Oura Rings as well! Both devices generate a wealth of information that can be analysed to explore different aspects of health and behaviour in FTD.
Accelerometer
While the AX6 accelerometer may look like a small device, it collects a lot of detailed information about how we walk. Attached to the lower back with a small adhesive patch, it is a triaxial recording device, meaning it measures the body’s acceleration in three directions. This allows us to build a precise picture of a person’s gait and we can monitor any changes over time.
BRAIN Tap Test
The online BRadykinesia Akinesia INcoordination (BRAIN) tap test was originally developed for Parkinson’s disease, but it can also provide valuable insights into motor function in other conditions, such as FTD. In this test, participants are asked to alternate tapping between two specific keys on a computer keyboard for 30 seconds using only one hand. It can be completed on any computer at home, and provides useful measures of motor skills such as speed, accuracy, and coordination.
Portable Muscle Assessments
Investigating muscle function is important in FTD because changes can occur, especially as FTD is also related to another condition known as motor neuron disease (MND). One focus of our research are fasciculations which are small, sometimes barely noticeable, muscle twitches. Everyone experiences these from time to time, especially after exercise, or even a morning coffee. However, fasciculations are also being explored as a potential early marker of MND and FTD. This is particularly relevant for carriers of the C9orf72 repeat expansion, a genetic change that can cause both conditions.
In GENFI, we investigate these fasciculations using two complementary methods: muscle ultrasound and surface EMG. Muscle ultrasound uses high-frequency sound waves to create an image of the inside of muscles, which can be recorded as a short 1-minute video. Surface EMG records the electrical activity generated by our muscles using electrodes placed directly on the skin. The surface EMG work is part of our collaboration with the Neural Circuits for Movement Laboratory, led by Prof. Brownstone.
If you would like to learn more about muscle ultrasound and fasciculations, check out our recent post on the FTDtalk Instagram!
So, what happens during a GENFI visit?
During a GENFI visit, participants may take part in several components of the EDoF study. They will start by completing Ignite and the BRAIN Tap Test, which will be repeated at home. Some participants, particularly those with a family connection to the C9orf72 repeat expansion, will also undergo non-invasive muscle recordings during the visit, using ultrasound and surface EMG. Our team will then set up the Fitbit and Oura Ring, guiding participants step by step to make sure the devices are worn comfortably and recording data correctly. Their connected smartphone apps allow participants to explore their own health tracking if they are curious. A researcher will also attach the accelerometer to the lower back, which is worn for about a week. Finally, once the month-long testing period is complete, all devices can be sent back to us by post.
If you are interested in learning more about GENFI visits tap here click here to see what participating involves!
Luna Nordenström, on behalf of the FTD talk team.
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