Center for Large Data Research and Data Sharing in Rehabilitation

Linda Tickle-Degnen, PhD, OTR/L
Professor,
Department of Occupational Therapy
Tufts University

General Description

The Social Self-Management of Parkinson’s Disease study (SocM-PD) is a mixed-method (quantitative-qualitative) prospective cohort study of how people with Parkinson’s disease (PD) and their primary caregiver (as available) naturalistically manage chronic disease, wellness and social life in their home and community. This project began April 1, 2013 and data collection was completed on March 31, 2019. The long-term objective of this project is to provide evidence to guide person-centered interventions that support social integration and overall health and well-being for those living with PD, and to contribute to the knowledge about facial masking for social life. A useable archived database will contribute to the knowledge about naturalistic home and community living with PD and serve as a model for researching naturalistic living with chronic disabling conditions that have socially incapacitating symptoms.

Jaynie Yang PT, PhD
Professor,
Department of Physical Therapy
University of Alberta

General Description

The Retraining Walking Over Ground in a Powered Exoskeleton After Spinal Cord Injury study was a prospective cohort study using the ReWalk powered exoskeleton to train people with chronic, severe spinal cord injury to walk. Researchers were able to determine training dosage required for walking proficiency in the device, the sensory motor changes in the nervous system induced by the training, the functionality of the device in a home-like environment, and the participants’ perspective on the device and training. There are increasing numbers of small trials published with respect to the use of powered exoskeletons for over ground walking. Since these trials are very time consuming to complete, and each study has a small number of participants, depositing these data in a publically available database will allow meta-analyses across studies in the future.