Digital Measures For Tracking Functional Capacity To Advance Neuromuscular Disease Research

By Rakesh Pilkar, PhD

This presentation introduces a dual-endpoint approach to monitoring neuromuscular disease progression through two high-centile digital measures: Six-Minute Activity 95th Centile (6M95C) and Stride Velocity 95th Centile (SV95C).

While SV95C is an EMA-qualified metric for ambulatory patients that captures peak mobility through ankle-worn sensors, 6M95C addresses a critical gap by providing an effort-independent, objective assessment suitable for both ambulatory and non-ambulatory populations. Recent clinical data in Duchenne Muscular Dystrophy (DMD) demonstrate that 6M95C correlates strongly with skeletal muscle strength and reliably detects functional decline even after the loss of ambulation. By capturing real-world "peak" performance rather than clinic-constrained capacity, these measures offer a sensitive, low-burden framework for longitudinal tracking. Together, 6M95C and SV95C provide a comprehensive toolkit for clinical trials, enabling researchers to quantify disease progression and therapeutic efficacy across the full functional spectrum of neurodegenerative disorders.