Administrative Core
Progress
Accomplishments during this reporting period
- 1Hosted a UR Udall Investigators annual meeting, which included outreach to academic and lay communities
- 2Filmed a “Best of Udall Centers” ParkinsonTV series highlighting the research efforts of fellow Udall Centers
- 3Released a book on Ending Parkinson Disease in collaboration with preeminent leaders in Parkinson’s research
- 4Launched CHeT TV, introducing two webcast series to widely disseminate information on Parkinson’s disease research and innovation in clinical trials
#1
Hosted a UR Udall Investigators annual meeting, which included outreach to academic and lay communities
We hosted the UR-Udall Investigators meeting September 11-12, 2019. UR-Udall Center members from across the country convened in Rochester, NY to discuss Year1accomplishments, plans for Year 2and beyond, and ideas to enhance and expand our collective efforts. Dr. Dina Katabi, Project Lead for Research Project 4.3 (Emerald), kicked off the meeting with a keynote presentation, “Seeing through Walls,” presented to members of the URUdall Center and members of the University of Rochester academic community.
The Investigators meeting included a board meeting with members of the External and Research Partner Advisory Boards, an Advanced Analytics Core breakout session, and hands-on workshops to demonstrate each of the technologies. The meeting concluded with an event, CHeT Innovates, attended by over 150 individuals from the community including researchers and research participants. The event featured technology demonstrations and a discussion on “The Power of Research Participants”, with UR-Udall Center members:
- Erika Augustine, MD, MS, University of Rochester – Co-Director, Administrative Core
- Paul Cannon, PhD, 23and Me –Research Partner Advisory Board
- Larsson Omberg, PhD, Sage Bionetworks –Advanced Analytics Core
- Reni Winter-Evans, MSW, LSW –Research Partner Advisory Board
- Ira Shoulson, MD, University of Rochester–PD-PROP Project lead
There were several opportunities to network throughout, culminating in the Technology & Rare Neurological Disease Symposium (TRNDS), chaired by Dr. Erika Augustine, on September 13. Attended by members of the UR-Udall Center, the event focused on emerging therapies, treatment access, and new tools and technologies to modernize clinical research. Mr. Ben Schlatka, CEO, President and Co-founder of MC10, the technology collaborator that provides wearable sensors for our Research Project 4.1participated in the symposium as well as Dr. Karl Kieburtz, Professor of Neurology at the University of Rochester, Project Lead of our Research Project 1, Modeling and Simulation.
#2
Filmed a “Best of Udall Centers” ParkinsonTV series highlighting the research efforts of fellow Udall Centers
During the annual NINDS Udall Symposium in Bethesda, MD in October 2019, we filmed interviews with investigators from each national Udall Center, highlighting research innovations. In addition, we interviewed Dr. Walter Koroshetz, Director of NINDS, who provided a global view of the Udall program’s research aims and impact. We are working with the NINDS public relations team to finalize the videos and post them on the NINDS Udall Center website, to make the program’s groundbreaking work accessible to all.
#3
Released a book on Ending Parkinson Disease in collaboration with preeminent leaders in Parkinson’s research
Released by Public Affairs on March 17, 2020, Ending Parkinson’s Disease –A Prescription for Action is a best-selling book on Parkinson disease, which proposes a bold PACT to Prevent the disease, Advocate for protective policies, Care for patients, and Treat the condition with innovative therapies. The authors gather the expertise of clinicians, patients, and cutting-edge researchers to tell the full story of Parkinson’s–and what we can do to end it. As we confront this coming wave of disease, this book is an indispensable guide for patients, families, clinicians, scientists, politicians, and activists.
The book was inspired by two papers (with the same authors) published in leading medical journals, cited over 120 times: The Parkinson Pandemic – A Call to Action and The Emerging Evidence of the Parkinson Pandemic. The authors are prominent leaders in Parkinson’s disease care, research and advocacy:
- Dr. Ray Dorsey, David M. Levy Professor of Neurology and Director, Center for Health + Technology, University of Rochester UR-Udall Center Director
- Dr. Todd Sherer, Chief Executive Officer, Michael J. Fox Foundation for Parkinson’s Research
- Dr. Michael Okun, Adelaide Lackner Professor and Chair of Neurology, University of Florida; Medical Director, Parkinson’s Foundation
- Dr. Bastiaan “Bas” Bloem, Professor of Neurology and Director of the Centre of Expertise for Parkinson & Movement Disorders, Radboud University Medical Centre
#4
Launched CHeT TV, introducing two webcast series to widely disseminate information on Parkinson’s disease research and innovation in clinical trials
To widely disseminate information on Parkinson’s disease research and innovation in clinical trials, we launched CHeT TV and introduced two webcast series (live on Zoom): Ending Parkinson’s Disease: Live and CHeT Talks. To date, over 2,000 individuals have tuned in to nearly 20 webcasts, with nearly 200questions answered by our expert speakers.
Ending Parkinson’s Disease: Live is a series of free webcasts highlighting key aspects of our fight against this disease, featuring the book’s authors and expert guests, including those who work in related fields and those impacted by the disease. Our May 15th webcast, “Parkinson’s and Pesticides” featured Dr. Ray Dorsey, Dr. Caroline Tanner, a leading neurologist at UCSF, and Terri McGrath, a farmer who likely developed Parkinson’s from pesticide exposure.
CHeT Talks is a series of free webcasts, virtual fireside chats with innovators in health care and clinical trials from across the globe. Guests have included Dr. Peter Bergethon, Vice President and Head of Digital and Quantitative Medicine at Biogen, Dr. David Brailer, Executive Chairman of Health Evolution, Susan Dentzer, former editor-in-chief of Health Affairs, and Dr. Dina Katabi, Professor of Electrical Engineering and Computer Science at MIT, MacArthur Fellow, and UR Udall Project lead for the Emerald study.
The Morris K. Udall Center of Excellence for Parkinson's
Disease Research at the University of Rochester
.png)
.png)
