Insights from the ALLFTD Investigator Meeting

Members of the CSAND Lab recently had the privilege of attending the 2023 ALLFTD Investigator Meeting, hosted locally in Denver, Colorado. This event brought together an exceptional group of researchers, clinicians, and experts in the field of frontotemporal dementia (FTD) to exchange knowledge, discuss ongoing projects, and explore potential avenues for future research. Here we will highlight the key updates and insights that emerged from this collaborative meeting, including a closer look at the efforts being made to deepen our understanding of FTD and develop effective treatments.

The ALLFTD Study:

As a reminder, ALLFTD is a multisite research consortium aiming to study diseases fitting under the frontotemporal lobar degeneration (FTLD) umbrella. To better understand these conditions, the trial is focusing on characterizing genetic cases (familial and sporadic), collecting comprehensive cognitive and behavioral data, and establishing a database of biological specimens including blood, imaging, cerebrospinal fluid (CSF), and more. The study also aims to share results and samples with the scientific community at-large to better address additional scientific questions about FTLD syndromes.

Core and Project Updates:

The collaborative nature of this consortium and emphasis on multidisciplinary approaches meant a substantial portion of the meeting was dedicated to project and board updates, where various working groups presented their progress. These updates underscored the dedication and diverse expertise within the ALLFTD community.

The Engagement Board: This committee is designed to act as a two-way street between patients, their families, the public, and researchers. As a way of disseminating information, they are in the process of creating short informational videos to help explain the diseases and what a potential participant could expect from research.  

The Biofluid Core: The group reported that they collected plasma on over 3,700 individuals. These samples are being used for a variety of cutting-edge research, such as the interaction between genes and neurofilaments (proteins in neurons often thought to serve as markers of ongoing disease activity).

The Genetics Core: This core has passed 2,000 DNA samples and sequenced about 600 samples to date.  They have found many of the same previously known gene variants, but have also identified some less common mutations and a potential genetic modifier.

The Imaging Core: Imaging teams have about 1,300 images to-date and about 3,100 datasets. In accordance with achieving the goal of equitable dissemination, they are working on a method to share unidentifiable imaging files with other researchers.

Notably, the combined work of the core groups allowed for projects focused on both asymptomatic and symptomatic individuals, with the aim of identifying early markers and potential therapeutic targets. Early results in asymptomatic groups have found imaging and certain proteins in the brain become abnormal prior to the onset of symptoms. Researchers identified a group of regions in the brain (the thalamus and frontal lobe to name a few) that are sensitive to mutations. For symptomatic individuals, results suggested that social function and behavior (e.g. disorganized behaviors) are good predictors/early identifiers. While motor symptoms vary, even amongst the same mutations, it appears that certain types could predict the disease onset.

Clinical Evaluation and Therapeutics:

The ALLFTD Clinical Evaluation Squad (ACES) provided a comprehensive update on their efforts to standardize and enhance clinical evaluations for individuals with FTD. Discussions revolved around the challenges in therapeutic development, including cohort building, data sharing, and trial design. For example, the group is currently updating one of the tests used to rate the level of patient impairment and symptoms. In addition to improving the reliability and accuracy of the test, the researchers are also attempting to develop an electronic version to increase accessibility. The significance of collaboration and international FTD initiatives was also emphasized, highlighting the global impact of this research.

Renewal and Future Directions:

As the meeting progressed, participants shifted their attention to the future, particularly focusing on the renewal of the ALLFTD initiative. Engaging in thought-provoking discourse, attendees explored potential new cores, identified infrastructure requirements, and deliberated on the necessity and logistics of remote research. There were also discussions about disclosing research results to participants and the ethical considerations surrounding this practice. These forward-thinking conversations demonstrated the commitment and enthusiasm of the ALLFTD community to push the boundaries of FTD research.


The ALLFTD Investigator Meeting served as a catalyst for collaboration, knowledge sharing, and innovation in the field of frontotemporal dementia. It showcased the remarkable progress made thus far and set the stage for future research endeavors. With dedicated professionals working together, the ALLFTD consortium is poised to continue making impactful contributions towards improving the lives of individuals affected by FTD. Through collective efforts and an unwavering commitment to scientific excellence, we can bring hope to those living with FTD and their loved ones.