Feasibility and acceptability of remote smartphone cognitive testing in frontotemporal dementia research

Abstract

Introduction Remote smartphone assessments of cognition, speech/language, and motor functioning in frontotemporal dementia (FTD) could enable decentralized clinical trials and improve access to research. We studied the feasibility and acceptability of remote smartphone data collection in FTD research using the ALLFTD Mobile App (ALLFTD‐mApp). Methods A diagnostically mixed sample of 214 participants with FTD or from familial FTD kindreds (asymptomatic: CDR®+NACC‐FTLD = 0 [ N = 101]; prodromal: 0.5 [ N = 49]; symptomatic ≥1 [ N = 51]; not measured [ N = 13]) were asked to complete ALLFTD‐mApp tests on their smartphone three times within 12 days. They completed smartphone familiarity and participation experience surveys. Results It was feasible for participants to complete the ALLFTD‐mApp on their own smartphones. Participants reported high smartphone familiarity, completed ∼ 70% of tasks, and considered the time commitment acceptable (98% of respondents). Greater disease severity was associated with poorer performance across several tests. Discussion These findings suggest that the ALLFTD‐mApp study protocol is feasible and acceptable for remote FTD research. HIGHLIGHTS The ALLFTD Mobile App is a smartphone‐based platform for remote, self‐administered data collection. The ALLFTD Mobile App consists of a comprehensive battery of surveys and tests of executive functioning, memory, speech and language, and motor abilities. Remote digital data collection using the ALLFTD Mobile App was feasible in a multicenter research consortium that studies FTD. Data was collected in healthy controls and participants with a range of diagnoses, particularly FTD spectrum disorders. Remote digital data collection was well accepted by participants with a variety of diagnoses.

Reliability and Validity of Smartphone Cognitive Testing for Frontotemporal Lobar Degeneration

“…Replicability was tested by dividing the sample into a discovery cohort (n = 258) comprising all participants enrolled until the initial data freeze (October 1, 2022) and a validation cohort (n = 102) comprising participants enrolled after October 1, 2022, and 18 pilot participants 11 who completed the first session in person with an examiner present during cognitive pretesting. Sensitivity analyses excluded this small pilot cohort.…”

“…The app includes cognitive, motor, and speech tasks. This study focuses on 6 cognitive tests developed by Datacubed Health 11 comprising an adaptive associative memory task (Humi’s Bistro) and gamified versions of classic executive functioning paradigms: flanker (Ducks in a Pond), Stroop (Color Clash), 2-back (Animal Parade), go/no-go (Go Sushi Go! ), and card sort (Card Shuffle) ( Figure 1 and eMethods in Supplement 1 ).…”

“…In the ALLFTD Consortium (Advancing Research and Treatment in Frontotemporal Lobar Degeneration [ARTFLD] and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects [LEFFTDS]), the ALLFTD mobile Application (ALLFTD-mApp) was designed to remotely monitor cognitive, behavioral, language, and motor functioning in FTLD research. Taylor et al 11 recently reported that unsupervised ALLFTD-mApp data collection through a multicenter North American FTLD research network was feasible and acceptable to participants. Herein, we extend that work by investigating the reliability and validity of unsupervised remote smartphone tests of executive functioning and memory in a cohort with FTLD that has undergone extensive phenotyping.…”

Executive Summary of 2023 International Conference of the Korean Dementia Association (IC-KDA 2023): A Report From the Academic Committee of the Korean Dementia Association

“…Key achievements included clinical rating scale development, validation of multimodal biomarkers for trials, and fluid biomarker validation, 30 notably plasma neurofilament light chain. 31 32 Ongoing studies explored genomics and digital biomarkers, 33 culminating in a global platform trial for testing novel FTD therapies, initially focusing on MAPT gene mutations. He emphasized future studies to refine outcome measures and extend trials across all FTD forms..…”

“…ALLFTD has also identified novel clinical and fluid-based measures potentially tracking disease evolution and individual vulnerability to neurodegeneration. 31 34 Furthermore, the consortium has piloted mobile-phone-based applications, 33 aiming to enhance clinical trial efficiency and broaden research participation opportunities. This substantial progress signifies a crucial step toward developing effective treatments for this devastating disorder.…”