From September 15–17, 2025, the Association for Frontotemporal Degeneration (AFTD) hosted the annual FTD Research Roundtable in Washington, D.C. This year’s meeting, co-chaired by Professor Jon Rohrer, focused on developing outcome measures for clinical trials in FTD.
The Roundtable is a unique forum that brings together voices from academia, industry, regulatory agencies, advocacy groups, funders, and those with lived experience of FTD.
Meeting Overview
Across two days, participants explored the challenges and opportunities in creating outcome measures that can meaningfully track disease progression and treatment impact. Sessions covered topics including clinical assessments, trial implementation, biomarker development, and community-led initiatives, as well as a special session on TDP-43 biomarkers.
The program also highlighted the critical role of family advocates and registries in shaping research priorities. Voices of lived experience were interwoven throughout the meeting, underscoring that outcome measures must reflect not only what is clinically measurable, but also what is practically meaningful.
Key Outcomes
Biomarker Development and Validation
A strong emphasis was placed on the need for reliable biomarkers that can detect FTD early, monitor progression, and measure treatment response. Researchers highlighted ongoing efforts to refine both PET imaging ligands and biofluid-based assays, with a particular focus on tauopathies and TDP-43.
Equally important is the harmonization of these approaches across labs and consortia. Replicating and validating results is essential for ensuring that biomarkers can be trusted and implemented in global clinical trials.
Outcome Measures and Clinical Trials
This year’s Roundtable also focused on refining outcome measures. FTD presents with diverse symptoms, making it challenging to capture early changes. Discussions centred on improving existing tools and designing trial structures that can handle disease heterogeneity.
A few specific examples showcased innovation in this area:
- Remote ALSFRS: Some attendees shared their work on developing a digital version of the ALS Functional Rating Scale (Revised), an essential tool in FTD-ALS research. By enabling remote assessment, this initiative can expand participation and accessibility.
- ALLFTD and GENFI studies: Both research groups are working toward remote protocols, reducing barriers for individuals and families to join studies, and ensuring a more representative research base.
These efforts reflect a broader push toward digital health technologies, which have the potential to transform trial accessibility and efficiency.
Collaboration and Data Sharing
Another outcome of the meeting was focused on collaboration. Attendees focused on biomarkers for TDP-43 and FTLD-tau to advance shared projects, while forums like the Roundtable itself are helping sustain momentum across institutions.
Data sharing was also a major theme amongst attendees: Standardized, open-access resources could accelerate progress, enabling discoveries in one trial to inform the entire field.
Family Perspectives and Engagement
Another feature of this meeting was the active involvement of people with lived experience. Family advocates played a key role in shaping conversations about what meaningful change looks like, both in daily life and in trial outcomes.
A particularly moving moment came when Cure MAPT, an advocacy group representing families affected by MAPT-related FTD, shared a video highlighting the lived realities of the disease.
Looking Ahead
The 2025 Roundtable reaffirmed the FTD research community’s collective priorities:
- Building and validating biomarkers that bring precision to diagnosis and trial designs.
- Creating more sensitive, harmonized clinical outcome measures that capture both clinical meaningfulness.
- Expanding digital tools and remote protocols to make participation more accessible.
- Strengthening collaborations and data sharing so progress is faster and more equitable.
The Research Roundtable continues to be a vital catalyst for progress in FTD research, where every conversation brings us closer to a future with treatments for FTD.
Amelia Blesius, on behalf of the FTD talk team.
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