Reimagining Mobility for Adolescents with CMT User-Centric Development of Exoskeletons as Next-Gen Alternatives to Traditional AFOs

Results Group LLC together with the Charcot-Marie-Tooth Association and the Center of Excellence in Charcot-Marie-Tooth (CMT) at Connecticut Childrens’ Hospital, will conduct a 6-month project to re-imagine assistive technology to address a critical gap in the start of treatment of youth with the most prevalent form of neurodegeneration. The goal of this project is to involve patients, families and health care providers to address the current lack of user-accepted options for treating children and adolescents with CMT which has resulted in a delay in treatment initiation and a missed opportunity to start early preventative care. Our objectives are: 1) to involve youth with CMT, their families and healthcare providers in the design process to understand the needs of youth with CMT and access to treatment, so we can 2) translate our current exoskeleton research to create new alternative to today’s ankle-foot bracing options and create new concept sketches and prototype; such that we can 3) design a Phase II clinical study that overcomes barriers to participation of underserved populations, with sufficient power for clinical significance, and that focuses on outcome measures that will evaluate meaningful lower limb support. The anticipated outcomes of this patient-centric and inclusive new type of brace include: 1) significantly enhanced odds of maintaining mobility for more years into adulthood for people with CMT, 2) increased mobility and participation in daily educational, social and family activities, and 3) improvements in psycho-social outlook. The products generated will include a human factors report, a set of initial sketches, physical prototype sample, and an inclusive Phase II study plan.