Project 2:
Progress

1

Recruited and enrolled 277 participants

We fully enrolled 23andMe-identified LRRK2 G2019S carriers with and without Parkinson’s disease in this 36-month virtual observational study. 277 participants completed a baseline visit, 263 completed a year one visit (95% retention), and year two visit are ongoing with an expected completion date around July 2022. Virtual visits have been well received by participants, and we are establishing a well-characterized, clinical trial-ready cohort.

2

Engaged and shared information
with study participants


VALOR-PD stands for Virtual Assessment of LRRK2 carriers to Optimize Research of Parkinson’s Disease. The study team has endeavored to engage research participants in numerous ways. Participants stay informed in between study visits through newsletters and webinars.

The newsletter provides news on study progress and updates, and features profiles on the research team. Newsletters are automatically sent to participants approximately 6 months after each annual visit.

We regularly host webinars, which are open to all enrolled participants and cover study background, updates, and a Q&A portion with study investigators and featured guests. Our most recent webinar, which you can watch below, was held on January 11, 2022. Prior webinars were held on May 19, 2021 and June 16, 2020 - and can be viewed here.

3


Published manuscripts & presented at conferences

The Journal of Parkinson Disease published our paper, A virtual cohort study of individuals at genetic risk for Parkinson’s disease: study protocol and design, in 2020. A manuscript with baseline results from this study is also in progress.

Julia Soto, Lead Clinical Research Coordinator, won 2nd place in the National Institute of Neurological Disorder and Stroke Young Trainee Presentation on VALOR-PD.

Our research team presented at the Movement Disorder Society 2021 Conference, and was awarded a top abstract. We also presented this research at additional leading conferences, such as the International Association of Parkinsonism and Related Disorders and the American Academy of Neurology.


The Morris K. Udall Center of Excellence for Parkinson's
Disease Research at the University of Rochester

Udall acknowledgement for publications: “Research reported in this publication was supported by the National Institute Of Neurological Disorders And Stroke of the National Institutes of Health under Award Number P50NS108676. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.”