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.

Stroke Initiative for Gait Data Evaluation (STRIDE)

Natalia Sánchez, PhD
Assistant Professor of Research
Division of Biokinesiology and Physical Therapy
University of Southern California

General Description

The Stroke Initiative for Gait Data Evaluation (STRIDE) is an initiative based at the University of Southern California to create an inter-institutional, public database containing de-identified demographic and kinematic, kinetic, and spatiotemporal measures assessed via gait analysis in individuals post-stroke, to provide a larger and more heterogeneous research dataset than that typically amassed at a single institution. The data in STRIDE can be used to run pilot analyses and power calculations for research studies, design and validate statistical models to test associations between gait variables, provides data for simulation-based biomechanical studies in stroke and provides data to assess the reproducibility of research findings, without the added data collection requirements. By creating the STRIDE database in ADDEP, we will ensure that research data can be used by secondary users long into the future, enhancing data impact and visibility to advance the field of stroke rehabilitation.