Clinical Core
Progress
Accomplishments during this reporting period
- 1Led enrollment of Research Projects 2, 3 and 4
- 2Initiated activities to enhance engagement with underrepresented minorities
- 3Incorporated a new outcome measure, PD-PROP, into Research Project 4
#1
Led enrollment of Research Projects 2, 3 and 4
During the current reporting period, Clinical Core members have led recruitment, screening, and enrollment for Research Projects 2, 3 and 4. Enrollment is expected to be complete for Research Project 2 (Virtual Natural History Cohort,Valor PD) in Year 3, while recruitment for Super-PD (Research Projects 3 and 4) may be delayed due to the COVID-19 pandemic. See below for additional updates on recruitment and enrollment.
Dr. Karlo Lizarraga joined the faculty at the University of Rochester in 2019 as an Assistant Professor of Neurology. He is conducting research visits along with our other talented early career investigators (Dr. Jamie Adams, Dr. Ruth Schneider, and Dr. Christopher Tarolli), and pursuing his interest in understanding movement disorders with the use of technology.
#2
Initiated activities to enhance engagement with underrepresented minorities
In October 2019, we connected with a local organization, Common Ground Health, in an effort to reach African-American and Latino populations in the Rochester region and increase community awareness about Parkinson’s disease in these communities. UR-Udall Center PI, Dr. Ray Dorsey, has met with the group on a number of occasions and participated in interviews on local radio shows whose audiences are predominantly African-American to discuss Parkinson Disease and research. In addition, one of the leaders of Common Ground Health, Pastor Phyllis Jackson, has connected us with other community leaders and community members many of whom attended the CHeT Innovates event in September 2019. (See Administrative Core Accomplishments).
#3
Incorporated a new outcome measure, PD-PROP, into Research Project 4
Over the past year, we have incorporated PD-PROP (Patient Report of Problems) into theSuper-PD protocol. PD-PROP© is an initiative devised to capture the verbatim accounts of PD patients to make their voices heard. It is a self-administered questionnaire that focuses on assessing the participant’s most bothersome symptoms, the impact of those problems and their severity. Dr. Ira Shoulson, founder of the Parkinson Study Group (PSG), Professor of Neurology at the University of Rochester, and co-founder of Grey Matter Technologies, leads this effort to assess bothersome problems, functional consequences, problem severity, and self-interventions to lessen or relieve the problem.The process for analyzing the resulting data, moving from verbatim responses to curated data, is outlined below. The data are ultimately mapped with demographic information to provide insights for subsequent analyses.
The Morris K. Udall Center of Excellence for Parkinson's
Disease Research at the University of Rochester
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