Expanding Access to Assistive Walking Devices: Managing Symptoms for Child and Adolescent CMT Patients with Exoskeletal Boots - Results Group LLC together with the Charcot-Marie-Tooth Association (CMTA) and CMT Centers of Excellence at Mass General Hospital, St. Jude Hospital and Children’s Hospital of Colorado will conduct a 6-month project to re-imagine assistive technology to address a critical gap in the start of treatment of youth with CMT. The goal is to decelerate CMT progression by creating a new alternative to ankle/foot bracing which can be started years earlier than is possible with today’s ankle foot orthoses (AFOs) which have multiple issues of discomfort, bulkiness, high costs and stigma. Current clinical care guidelines acknowledge the difficulty of wearing AFOs and do not prescribe them until after significant disease progression, leaving 10+ years of missed opportunity for earlier treatment. Our objectives are: 1) to design a new exoskeleton bracing device hidden within a boot with greater drop-foot resistance 2) to conduct benchtop testing and compare boot performance to today’s best AFOs 3) to design a Phase II clinical study that overcomes barriers to participation of underserved populations. Products generated include: 1) a pendulum testing rig to evaluate trip hazards from drop foot, 2) three exoskeleton shoe prototypes, 3) benchtop test evaluation reports, and 4) a Phase II study plan. Implications include the ability to start bracing years earlier and reduce non-adherence, to: 1) Sustain daily activity levels in educational, social and family activities, 2) Reduce likelihood of developing compensatory gait and the accelerated loss of ankle/foot strength, 3) Support normal musculoskeletal development to better prepare adolescents for adulthood, and 4) Reduce the stigma of bracing to improve psycho-social outlook
