Our EDIT-FTD working group is exploring a big question: Can everyday digital tools – like smartwatches, wearables, and in-home sensors – help us spot the earliest signs of Frontotemporal Dementia (FTD)?
With support from the EU Joint Programme Neurodegenerative Disease Research (JPND), we recently held two online workshops. This was followed on from our in-person meeting in January where researchers from across the world shared their projects focused on digital health technologies. The purpose of the workshops was to explore what’s going well, what challenges we’re facing, and where we should focus our efforts next.
Listening to Lived Experience
In June, we spoke with people living at risk of developing FTD to understand how digital health technologies fit into daily life.
The conversation was both insightful and practical. Participants agreed these tools can be extremely helpful, but only if they are reliable. Devices that fall off, need frequent charging, or misinterpret movements can quickly become frustrating. Longer battery life, greater accuracy, and the option to add context to the data would make them far more useful.
We also discussed the timing of data collection. Short, intensive bursts of monitoring once a year don’t always give the full picture. A more regular, less intensive approach, such as once every three months, could better capture gradual changes over time and reveal early signs that brief monitoring periods might miss.
Talking about Regulatory Pathways
Our second workshop brought together experts from the European Medicines Agency (EMA) and the Critical Path Institute to discuss how digital health technologies could be used in research.
At present, these tools are most likely to be used as a way to detect very early changes in movement or behaviour to help enrol participants in asymptomatic clinical trials, rather than to directly measure whether treatments are working. This approach is especially important, given that the first clinical trial in asymptomatic progranulin carriers began in January this year.
Why This Matters
Our January meeting and both recent workshops, highlight that digital health technologies hold great promise for detecting early changes in FTD.
Our next step is to meet again in September to bring together everything we’ve learned so far to outline recommendations for how digital health technologies can be successfully implemented in FTD clinical trials. We are already looking forward to the meeting and are excited to see what the future of digital health technologies in our research will look like!
If you are curious about the current digital measures that our research study uses, click the link below:
GENFI digital team:
https://www.ftdtalk.org/research/our-projects/digital/
Amelia Blesius, on behalf of the FTD talk team.
Keep up to date on all things research by following us on twitter – @FTDtalk / @GENFI1 and Instagram
