A study recently published in the journal JAMA Network Open highlights the reliability and validity of a digital assessment tool, the ALLFTD Mobile App (ALLFTD-mApp) for the remote diagnosis of FTD. Developed in partnership with Datacubed Health, the ALLFTD-mApp allows clinicians to measure cognitive function in a person’s own home using a smartphone, rather than in the clinic.

On average, it takes 3.6 years to get a diagnosis due to the overlap FTD’s symptoms share with other neurodegenerative diseases and psychiatric disorders. As senior author Adam Boxer, MD, PhD, told The Guardian in an interview, most people with FTD are diagnosed later in the progression of the disease because of this overlap and the disease’s younger age of onset. In addition, as the study notes, many of the measures used in clinical settings to diagnose FTD are not sensitive to the presence of the disease until symptoms have already begun to show. This delay not only hampers the ability of clinicians to intervene during the early stages of the disease but also the efforts of researchers studying the mechanisms of FTD or developing new treatments.

Another barrier to accessing treatment or participating in clinical trials is the limited number of FTD centers, most of which are located in major cities.  In addition to some families living far from FTD centers, the progression of symptoms will eventually make traveling too difficult for persons diagnosed.

The ALLFTD-mApp was designed to address these challenges by making diagnostic tests available to affected families where they live, allowing researchers to collect the data they contribute remotely. The app, a smartphone-based app that supports Android and iOS, was the subject of a previous study which found that it was feasible, straightforward to use, and well-accepted by participants. The more recent study evaluates whether the app can provide valid and reliable data for the study of FTD.

Those who took part in the study were already ALLFTD participants, with 360 participants recruited from a pool of over 1,000. They were divided into one of two groups: a “discovery” group of 258 to collect initial data and a second group of 102 to validate the results of the first. All who participated had previously contributed data to ALLFTD through traditional clinical measures (with some also contributing imaging data), providing the authors with data to compare to the app results.

Participants took part in three 11-day assessment sessions over six months. Each session within the app took 25-35 minutes to complete. During the study, the app included six cognitive tests based on existing measures already used by clinicians.

According to the study results, all but one of the tests were reliable in providing FTD diagnostic data. The authors noted that the app provided consistent scores during retesting.

The authors found that the performance of the app-based tests was generally aligned with in-person measures. Worse performance in app-based tests was associated with disease severity and progression, with those experiencing more pronounced symptoms typically scoring lower. It was discovered that participants over the age of 45 who carried a risk-creating gene variant performed significantly worse compared to those who did not have FTD or a risk-creating gene.

Crucially, the app could distinguish between people with and without FTD with a 93% success rate. Compared to the Montreal Cognitive Assessment, a clinical measure used in dementia research and treatment worldwide, ALLFTD’s app was more accurate in differentiating people without symptoms of FTD and those whose symptoms are just beginning to show.

However, an essential limitation of the study is that participants were overwhelmingly white English speakers. To address this limitation, work is underway to adapt the tests to other languages and cultures. Additionally, a significant number of trial candidates declined to participate; it will be necessary for researchers to examine why people might be reluctant to use a smartphone-based app.

First author Adam Staffaroni, PhD, told The Guardian that while there are currently no plans to bring the app to the public, it could become an invaluable tool for scientists conducting FTD research.

“Eventually, the app may be used to monitor treatment effects, replacing many or most in-person visits to clinical trials’ sites,” Dr. Staffaroni said.

“This study is an essential step towards designing clinical trials that reduce participant travel burden and test the effectiveness of treatments to prevent onset of FTD disorders,” AFTD Senior Director of Scientific Initiatives Penny Dacks, PhD, said in response to the study. “When researchers can measure the earliest stages of decline, they can also measure whether a treatment works to prevent or delay onset of these devastating conditions. We look forward to further validation of this tool and other approaches to enabling FTD clinical research.”

Authors Dr. Adam Staffaroni and Dr. Adam Boxer have received AFTD grants to support their research. Dr. Staffaroni received a 2024 Digital Assessment Tools for FTD and ALS grant to support his work on ALLFTD’s app. In 2018, Dr. Boxer received an FTD Biomarkers Initiative grant alongside colleague Howard Rosen, MD.

Are you interested in participating in FTD research? Visit the ways to participate page on our website to learn how you can join longitudinal studies like ALLFTD, sign up for the FTD Disorders Registry, and more.