UR Named National Center of Excellence for Parkinson’s Research

The University of Rochester has been selected as a Morris K. Udall Center of Excellence in Parkinson's Disease Research by the National Institute of Neurological Disorders and Stroke (NINDS). The new $9.2 million award brings together researchers from industry and multiple academic institutions to focus on the development of digital tools to enhance understanding of the disease, engage broad populations in research, and accelerate the development of new treatments for Parkinson’s disease. 

“We are currently in the midst of a Parkinson’s pandemic,” said University of Rochester Medical Center (URMC) neurologist Ray Dorsey, M.D., director of the Center for Health + Technology (CHeT) and principal investigator of the new UR Udall Center.  “From 1990 to 2015, the number of individuals with Parkinson’s disease globally has doubled and absent change will double again in the coming generation. The status quo is not working. The medical community must develop new approaches to better understand this complex disease, expand access to specialized care, and increase the speed and efficiency in how we bring new treatments to the market.”

“This designation is a testament to the leadership that the Department of Neurology and CHeT have demonstrated in building the international networks of scientists and research infrastructure necessary to conduct multi-center clinical trials for Parkinson’s disease,” said Mark Taubman, M.D., CEO of URMC. “This award recognizes the Medical Center’s growing reputation as one of the nation’s premier centers for neuroscience research and care and places us among the ranks of an elite group of academic medical centers that will accelerate the search for new ways to treat this disease.”

CHeT is a unique academic-based research organization with decades of experience working with industry, foundations, and government researchers in bringing new therapies to market for neurological disorders. Over the last 25 years, CHeT has helped conduct pivotal trials leading to seven FDA-approved treatments, including four for Parkinson’s disease. CHeT has also been identified as one of the flagship research programs working with the URMC Del Monte Institute for Neuroscience.

“The long history of research in Parkinson’s disease at the Medical Center formed the foundation for this recognition,” said URMC neurologist Erika Augustine, M.D., associate director of CHeT. “The Udall Center will develop new and innovative approaches to solving the challenges faced in Parkinson’s disease. These approaches will be strengthened with the resources of the award and by the academic and industry partnerships that will be formed by the new Center.”

The designation comes on the heels of a new report out this week in the journal Lancet Neurology which details growing global burden of Parkinson’s. The study shows that the number of individuals with Parkinson disease globally has more than doubled over the last three decades and that the rates of the disease, adjusted for age, are increasing significantly in almost every region of the world. Dorsey and Alexis Elbaz, M.D., Ph.D. with the French Institute of Health and Medical Research Paris, were the lead authors of the study, which was supported with a grant from the Bill and Melinda Gates Foundation.

The new UR Udall Center will undertake research utilizing mobile technologies, such as smartphones, wearable sensors, and telemedicine to expand the reach of research and to develop objective measures of the disease in real-world settings. 

The UR Udall Center will bring together industry and academic researchers with expertise in Parkinson’s, genetic testing, engineering, biostatistics, and computer science. Many of these research collaborations emerged from connections developed at the d.health Summit, an annual event organized by the University of Rochester that brings together thought leaders in the fields of technology and health. 

The NINDS funding for the Udall Center at URMC will support four research programs: 

• A team led by Karl Kieburtz, M.D., M.P.H., and Charles Venuto, Pharm.D., are partnering with GNS Healthcare and Origent Data Sciences to develop advanced machine learning tools to create models that identify and predict the progression of the disease and the potential impact of new therapies to help researchers better understand and potential anticipate the outcomes of clinical trials.
• Bob Holloway, M.D., M.P.H., Ruth Schneider, M.D., and fellow investigators are partnering with 23andMe to identify individuals across the country with a rarer inherited form of Parkinson’s disease – characterized by a mutation in the LRRK2 gene – and will follow study participants via telemedicine for four years in an effort to better understand the progression of the disease.
• Suchi Saria, Ph.D., with Johns Hopkins University, will partner with researchers at URMC, Aston University in the UK, and Sage Bionetworks to develop a successor to the mPower smartphone application that enables participants and researchers to assess features of the disease on smartphones.
• Dorsey will collaborate with Ehsan Hoque, Ph.D., and Gaurav Sharma, Ph.D., with the University of Rochester Goergen Institute for Data Science, URMC neurologists Jamie Adams, M.D., and Chris Tarolli, M.D., and researchers at MIT, the University of Michigan Udall Center, Intel, and MC10 to develop and evaluate several remote monitoring and wearable technologies that will help researchers more precisely understand how Parkinson’s disease affects individuals beyond what is observed when patients visit the clinic, but also in their homes and daily lives.

“The opportunity to apply technology to study complex health problems like Parkinson’s requires seamlessly integrating smart sensors in participant’s environment and leveraging the massive amount of data that they produce,” said Hoque, an assistant professor of Computer Science. “The new UR Udall Center represents the novel convergence of medicine and data science which has the potential to unlock new treatments for this disease.”

The four research projects will be supported by an administrative core led by Dorsey, Augustine, and Cynthia Casaceli, M.B.A., a clinical core led by Giovanni Schifitto, M.D., M.S., and an advanced analytics core that brings together bio-statistical and computer science expertise that will be led by Michael McDermott, Ph.D., and Jiebo Luo, Ph.D, a professor of Computer Science at the University of Rochester.

“We have entered a new era of clinical research, one that merges technological innovation and biomedical sciences and has the potential to transform and accelerate the therapeutic development process,” said Holloway, chair of the URMC Department of Neurology. “The URMC Udall Center will be at the forefront of efforts to develop the new tools that will deepen our understanding of the disease, break down the geographic barriers to participation in research, and apply new approaches to conducting research that will apply to Parkinson’s disease and many other neurological conditions from autism to Alzheimer’s disease.”

“The growing burden of neurological disorders demands that we rethink our approach to finding new ways to study and treat these diseases,” said John Foxe, Ph.D., the director of the URMC Del Monte Institute for Neuroscience. “CHeT has a long history of innovation in the field of experimental therapeutics and the new technologies that are developed as result of this grant will help us overcome barriers – such as rising development costs, and long, large, expensive trials with high failure rates – that have prevented the scientific community from bringing new treatments to market.”  

The NINDS Parkinson's Disease Research Centers of Excellence program was developed in honor of former Congressman Morris K. Udall of Arizona. Udall was elected to the U.S. House of Representatives in 1961 in a special election to replace his brother Stewart, who left the position to become President John F. Kennedy's Secretary of Interior. Udall was diagnosed with Parkinson’s in 1979; however, he remained active in Congress until his retirement in May 1991. He died in 1998 after a long battle with the disease. In 1997, President Bill Clinton signed the Morris K. Udall Parkinson's Disease Research Act of 1997 into law. URMC is one of eight centers across the country to participate in the program.