Objective/Rationale:
The Michael J. Fox Foundation's Fox Trial Finder is designed to facilitate and increase the participation of individuals with Parkinson's disease (PD) and degenerative parkinsonian syndromes in clinical trials and studies. Distance, disability and the distribution of movement disorder specialists and research centers limits participation of individuals with PD and other degenerative parkinsonian syndromes in clinical trials and studies. Web-based video conferencing can extend the reach of clinical research directly into the home, reducing the burden on participants and enabling broader participation.
Project Description:
Individuals who self-identify as having a degenerative atypical parkinsonian syndrome (multiple system atrophy, dementia with Lewy bodies, corticobasal degeneration or progressive supranuclear palsy) in the Fox Trial Finder volunteer registry will be invited to a virtual research visit. A movement disorder specialist in Rochester, NY will connect to the participant directly in his or her home using web-based conferencing akin to Skype. Individuals will provide a medical history, undergo a standardized assessment (specific to the diagnosis in question), a test of cognition, be asked about their experience with the virtual research visit and be asked about willingness to participate in future research studies remotely.
Relevance to Diagnosis/Treatment of Parkinson's Disease:
Our goal is for that anyone anywhere with PD or related degenerative parkinsonian syndromes to receive the care that he or she needs. We have established the feasibility of virtual research visits in individuals with PD, and, in this study, we lay the foundation for extending that vision to enable anyone anywhere with other degenerative parkinsonian syndromes to participate in research trials and studies.
Anticipated Outcome:
We expect these assessments to confirm the feasibility of conducting in-home virtual research visits remotely with individuals with atypical parkinsonian syndromes, establish the reliability of self-reporting an atypical parkinsonian syndrome in Fox Trial Finder participants. We hope that this study will demonstrate the willingness of individuals with atypical parkinsonian syndromes to participate in research trials and studies remotely.