From “Inflammation” to “Innovation”: How ON-FIRE is accelerating research in frontotemporal dementia
Inflammation emerged as a key player in dementia, contributing to the death of brain cells and the progression of symptoms. It was this link that inspired the launch of ON-FIRE, with the objective of building a national resource to investigate inflammatory processes in people with frontotemporal dementia (FTD) and accelerate the discovery of new biomarkers and treatments.
Back in December 2024, we recruited the first participant into the ON-FIRE study. Not even two years later, we have built a network of soon-to-be over 50 teams across the UK, all dedicated to accelerating research and trials in sporadic FTD and related disorders.
The pace of interest and progress over the past couple of years has shown us just how far ON-FIRE’s potential reaches, far enough that we felt the name needed to catch up. We have kept the acronym, but ON-FIRE now stands for Open Network for Frontotemporal dementia Innovation Research, evolving from its original meaning of Open Network for Frontotemporal dementia Inflammation Research.
What ON-FIRE collects
ON-FIRE gathers clinical and lifestyle information, medical history and brain scans alongside blood samples from people with FTD, related disorders such as progressive supranuclear palsy (PSP) and corticobasal syndrome (CBS), and healthy volunteers. We have also started pilot studies to collect digital markers data and to trial remote blood collection devices. These data and samples are made available to researchers internationally, by request.
Why the scope is widening
ON-FIRE was originally conceived to investigate the role of inflammation in FTD, and that remains a core objective. But as the network has grown, it has become clear that the data and samples we are collecting can fuel research far beyond inflammation alone.
So, what will ON-FIRE achieve?
Beyond inflammation-related changes, we will be able to examine other molecular changes in people with FTD and related disorders, at a scale large enough to also study the genetic and environmental factors influencing them. We also store blood samples long-term, so researchers can discover and validate new blood tests as technology and scientific understanding advance.
Supporting the next generation of trials
ON-FIRE is also laying the groundwork for future clinical trials. Participants can opt in to future contact about medical research, including trial participation. This helps researchers identify suitable candidates for their clinical studies, and it means people with FTD and related disorders are more likely to be offered appropriate experimental treatments, informed by the data and samples they have already contributed through ON-FIRE.
Two years in, ON-FIRE has grown from a single participant into a genuinely national resource, and its next chapter is just getting started.
