An article published in the journal Alzheimer’s & Dementia arose from AFTD’s inaugural Holloway Summit in 2022, which focused on digital health technologies (DHTs) and how they can help diagnose FTD.

DHTs use advanced computing platforms and sensors to quantify disease progression and assess clinical outcomes. The article – co-written by AFTD’s Dr. Amanda Gleixner, Dr. Shana Dodge, and Dr. Penny Dacks, as well as former AFTD staff member Dr. Debra Niehoff – highlights some of the FTD-specific technologies currently in development, the obstacles they face before being approved for clinical use, and suggestions for how FTD digital health technology development may be accelerated.

AFTD’s Holloway Summit and the scientific discussions it promotes are made possible thanks to the support of the Holloway Family Fund.

Rapid Technological Advancements Can Promote FTD Digital Tool Development

Attendees of the 2022 Holloway Summit, which included leaders in FTD science, neurodegenerative disease research, and digital tool development, engaged in a lively and productive three-day conversation about DHTs and their potential uses in FTD: improve clinical diagnosis, monitoring symptoms, facilitating data collection for clinical trials.

Clinicians have traditionally relied heavily on observable signs and symptoms to diagnose FTD, sometimes using medical imaging or genetic data as supplementary evidence. But as technology evolves at an ever-rapid pace, researchers are developing DHTs that can collect diagnostic data remotely, quickly, and, hopefully, more accurately.

Researchers have begun to evaluate DHTs that can assess speech, movement, and behavioral FTD symptoms. For example, the IGNITE mobile app converts several conventional pen-and-paper cognitive tests to an accessible digital format. Diagnostic data gathered from ALLFTD’s app lets clinicians distinguish between people with and without FTD with 93% accuracy. And the Oregon Center for Aging & Technology platform uses multiple sensors and devices (some worn by persons diagnosed with FTD) to monitor aspects of health and wellbeing like mobility, sleep, and cognition.

While not discussed at the 2022 summit, scientists are increasingly looking into machine learning as a way to streamline diagnosis and clinical care processes.

Validated Digital Health Technologies for FTD Still in Early Development

While many studies show that DHTs have considerable potential in FTD, none have been fully validated for routine clinical use. Many are still early in their development and may take some time before being ready for clinical trials. As Holloway Summit attendees pointed out, effective DHT development still faces several obstacles.

One concern is validating DHTs against current gold-standard clinical measures. Scientists must find a way to correlate the DHT data with the limited and sometimes subjective data provided by gold-standard tests. This, in turn, prolongs DHT development. But unfortunately, the study’s authors write, “There is no magic solution to this problem.”

DHTs that rely on self-reported data from people with FTD might also be confounded by anosognosia, or a lack of insight into one’s condition – a common symptom of FTD disorders. Anosognosia can cause someone with FTD to provide different answers about their own symptoms, compared to answers provided by a loved one.

The technology itself can also be an obstacle, primarily because many DHTs rely on emerging technologies like artificial intelligence, which is relatively early in its development and has various unaddressed challenges. Data harmonization is yet another obstacle – figures produced by different pieces of software won’t always be in the same format.

However, these issues can be navigated by collaboration between DHT developers, regulators, and industry experts – the very people who met and collaborated at the 2022 Holloway Summit. Regulatory agencies like the U.S. Food and Drug Administration (FDA) and the European Medicines Agency (EMA) are working on guidelines to help guide DHT development. Summit attendees discussed FDA resources – such as the Digital Health Center of Excellence – designed to facilitate the timely development and approval of DHTs and other health tools,aAnd the EMA has approved its first DHT, which evaluates the efficacy of treatments for Duchenne muscular dystrophy: a promising sign for the future of DHTs for FTD and other medical conditions.

AFTD is Helping Pave the Path Forward for DHTs

The annual Holloway Summit is just one way that AFTD promotes collaboration between researchers and shares their findings with the FTD community. The AFTD Education Conference brings together scientists, healthcare professionals, industry experts, persons diagnosed, and care partners to learn the latest updates from the FTD field. Meanwhile, the FTD Research Roundtable focuses on collaboration between biopharma companies, academia, government agencies, and advocacy groups to enhance FTD clinical trial outcomes.

Digital health tools aren’t the only technology-focused way to participate in FTD research. The FTD Disorders Registry is a powerful online platform that lets you share your lived experiences of FTD with scientists, connect with studies recruiting participants that you are eligible for, and stay up to date on the latest updates in FTD science.

AFTD is enthusiastic about supporting the advancement of digital health technologies. The 2022 Holloway Summit catalyzed digital health technology research funding with the Digital Assessment Tools program, which began in late 2023. These grants were co-funded by AFTD and the ALS Association. Adam Staffaroni, PhD, (UCSF), received $350,000 for his project “Harmonizing remote smartphone assessments of cognition, behavior, and motor functioning across the spectrum of FTD and ALS.” Additionally, $399,999 was awarded to Ashkan Vaziri, PhD (BioSensics) for a research study titled “Digital Measurements of Motor and Voice Functions in FTD.”

These grants are still active, and significant progress is being made. AFTD will share published results with the community as they are available.