FTD UK: Advancing Research in Frontotemporal Dementia

On the 30th of May, our team travelled to Edinburgh to attend FTD UK, an annual event that brings together clinicians and researchers across the United Kingdom who are working on frontotemporal dementia (FTD) and associated disorders.

A Collaborative Effort

FTD UK is coordinated by Professor Jonathan Rohrer (University College London), Professor James Rowe (University of Cambridge), Dr Kathryn Bowles (University of Edinburgh), and Dr Jenna Gregory (University of Aberdeen). This event provides an excellent opportunity to connect with fellow researchers and stay up to date on the latest developments in FTD research in the UK.  

Highlights from the Morning Sessions

This year’s programme featured a wide range of engaging presentations. Some of the talks included:

• Novel Imaging Modalities for Early Detection Presented by Holly Spence (University of Aberdeen)
• Elevated Cerebrospinal Fluid UCHL1 in Asymptomatic C9orf72 Hexanucleotide Repeat Expansion Carriers Presented by Lizzie Dellar (University of Oxford)
• Symptomatic Trials in FTD Presented by Alexander Murley (University of Cambridge)

  Following a lovely lunch break with a scenic view of Arthur’s Seat, the afternoon sessions began with a compelling presentation by Jane Osbourn from Alchemab Therapeutics. She discussed B Cell Repertoire Mining of Disease-Resilient Individuals to Identify Novel, Protective Auto-Antibodies for the Treatment of Neurodegenerative Diseases Another highlight of the day was hearing from our former PhD student, Imogen Swift. Now at Vesper Bio, Imogen shared an update on her work targeting Sortilin for the treatment of FTD-GRN. It is always inspiring to see previous team members making impactful contributions to the field.

Celebrating Early Career Researchers

The event concluded with the presentation of the Early Career Researcher Prizes, sponsored by the Alzheimer’s Society. We are incredibly excited that Amelia, one of our research assistants, received the Clinical Early Career Researcher Prize for her pilot study on heart rate variability in familial FTD. Her work focused on identifying early physiological changes in asymptomatic mutation carriers, particularly changes in heart rate variability (HRV), which is the variation in time between heartbeats. This is a key marker of autonomic nervous system function.

FTD affects autonomic functions, which are regulated by the autonomic nervous system. These include processes such as heart rate, respiration, and body temperature. The parasympathetic nervous system, responsible for "rest and digest" functions, is closely linked to HRV. Greater HRV is typically associated with better cardiovascular health and stress resilience, while lower HRV can suggest increased stress or underlying health conditions. Although HRV has not been widely studied in FTD, previous research has shown changes in autonomic function across the disease course. These include increased resting heart rate and altered pain sensitivity. Interoception, or awareness of one’s internal bodily states, is also disrupted in FTD.

The Role of Digital Health Technologies

Amelia’s project uses digital health technologies to remotely monitor symptoms. By collecting data more frequently and passively, these tools can help to detect changes earlier. As part of the GENFI study, participants wear a Fitbit for 28 days to record steps, sleep, and heart rate, including HRV. HRV is measured using a metric called the root mean square of successive differences (RMSSD). Higher RMSSD or HRV indicates greater activity of the parasympathetic nervous system. This can be linked to better cardiovascular health and stress resilience. Lower RMSSD suggests increased sympathetic nervous system activity, and decreased activity of the parasympathetic nervous system. This can be associated with stress, anxiety, and some underlying health conditions.

Key Findings from the Pilot Study

The pilot study included 93 participants, matched for age and sex. Findings included:

1. Increased HRV in asymptomatic carriers (CDR 0) compared to controls
2. Progressive decline in HRV at later stages, starting from the prodromal stage onwards

    This suggests parasympathetic dysfunction may change with disease progression. While no existing literature explains what occurs during the asymptomatic period, one hypothesis is that increased HRV in this stage could reflect higher stress resilience, which may diminish with the onset of symptoms.   This is a promising area of research, and Amelia is continuing her data collection as part of her PhD starting in October. In addition to HRV, she will be examining sleep and circadian rhythms. To enhance our understanding of digital wearables, the team has introduced the Oura Ring alongside the Fitbit, aiming to compare how different wearable devices measure HRV and determine which is most effective for future studies.  

Congratulations to All Award Winners

A huge congratulations also goes to Alex Cammack (UCL)  for winning the Basic Science Prize for Early Career UK FTD Researcher, also sponsored by the Alzheimer’s Society. His work focuses on Neuronal polyunsaturated fatty acids are protective in FTD/ALS. The contributions of all researchers at FTD UK reflect the exciting and important progress being made in the field, and we are already looking forward to next years conference which we will host in London!

   

Amelia Blesius, on behalf of the FTD talk team.

Keep up to date on all things research by following us on Instagram