The Doctor is in the house: Validation of a toolkit for remote monitoring of progressive neuromuscular and neurological conditions

The vast geographical area of Canada, the numerous months in which our climate can impact travel, and the lack of health care specialists in smaller urban and rural areas necessitate the development of new technologies and alternate ways to deliver health care services in Canada. People with neurodegenerative disorders (NDD), such as Amyotrophic Lateral Sclerosis, Muscular Dystrophy, and Multiple Sclerosis reside throughout Canada, most often in private homes. These disorders cause significant impairments in mobility, respiratory, swallowing, and communication functions, requiring regular and frequent monitoring by health care professionals. However, the effects of travel on these individuals and limited time for clinical assessments may prevent better health outcomes for persons with NDD from being realized. Our objective is to validate a "toolkit" that allows accurate measurement of key health indicators for individuals with NDD in their home or community, and that will be usable by the patient and/or their caregiver. Existing prototype tools, developed at the UNB Institute of Biomedical Engineering, that measure motion and force of the arms and legs will be complemented by commercially available lung force, O2 and weight measurement devices to form a toolkit for assessing health status of NDD patients. The project will be executed in three phases: 1) toolkit development into a user friendly system; 2) three small scale deployments in subjects' homes to collect data; 3) data review and analysis and dissemination of project results. The availability of remote monitoring and assessment tools will improve access to appropriate and timely interventions and care, reduce the physical and socioeconomic burdens of travel on patients and families, and potentially result in improved quality of life.