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Connect.Parkinson Study Completes Enrollment

The National Parkinson Foundation Removes Barriers to Expert Parkinson’s Care Through Telemedicine

MIAMI, FL—The National Parkinson Foundation (NPF) announced today that the Connect.Parkinson national research study, comparing telemedicine care delivered to remote patients from a Parkinson’s disease center of excellence to community-based care for Parkinson’s disease, has achieved its enrollment target. The 200 enrolled participants with Parkinson’s from across the country will be randomly assigned to continue their usual care, or to continue their usual care and see a Parkinson’s expert via Internet video calls over the course of one year. 

Connect.Parkinson is conducted by the University of Rochester, in collaboration with NPF, and is supported through a Patient-Centered Outcomes Research Institute (PCORI) award. This is the first nation-wide randomized, controlled clinical trial A research study in humans that aims to test a new intervention – this could be a drug, surgery or therapy like exercise or diet guidelines – to make sure it is effective and safe. of telemedicine for Parkinson’s and among the first national clinical trial of telemedicine that seeks to deliver care from a specialist to a patient directly in her home. Through NPF’s Centers of Excellence network, Peter Schmidt, PhD, Senior Vice President and Chief Mission Officer was able to provide a national network of expert care for the study.

“Expert Parkinson’s care has the potential to save 7,000 lives each year. However, for many patients today, access to expert care is difficult and time consuming.  We are working to change the paradigm and demonstrate that the highest quality care can be delivered anywhere,” said Dr. Schmidt.

The study team is led by Ray Dorsey, MD, a thought leader in digital health, who is announcing the completion of enrollment at the d.Health Summit 2015 in New York City on Friday, May 29. The summit provides a platform for national leaders in public policy, healthcare, finance and the high-tech industry to assemble for a day-long discussion on disruptive care models for aging Americans. 
“We are excited by the overwhelming interest and completion of enrollment in the Connect.Parkinson study. Over 1000 individuals with Parkinson’s disease and their families expressed interest in participating in the study, which speaks to the large latent demand for the next generation house call,” said Dr. Dorsey, Professor of Neurology at the University of Rochester Medical Center. “We thank PCORI, NPF, our partners, the sites, and the participants for all of their efforts to date. We look forward to the successful completion of the study and moving us closer to enabling anyone anywhere with Parkinson’s disease to receive care.” 

As chronic conditions affect an estimated 140 million Americans and account for more than 75 percent of healthcare spending today, the goal of the study is to demonstrate the effectiveness of using video technology in care for patients. Once scaled, this effort could bring together the country’s leading healthcare organizations and potentially transform care in unprecedented ways. 

“It’s one thing to show how one highly-skilled doctor can deliver effective care at a distance, as Dr. Dorsey has done in previous studies. It’s quite another to show how the same quality can be achieved with a network of providers at the scale of this study,” said Christopher Herot, Chief Executive Officer of SBR Health.

Additional partners in the study include SBR Health, Vidyo, IDSolutions, and PatientsLikeMe. 

The Connect.Parkinson study is part of NPF’s broader mission to improve the quality of care and to improve access to care for people living with Parkinson’s. For more information, call NPF’s Helpline, 1-800-4PD-INFO (473-4636). 

About Parkinson's Disease (PD)
Affecting an estimated one million Americans and four to six million worldwide, PD is the second most common neurodegenerative disease after Alzheimer's and is the 14th leading cause of death in the United States. It is associated with a progressive loss of motor control (e.g., shaking or tremor at rest and lack of facial expression) as well as non-motor symptoms (e.g., depression and anxiety A feeling of nervousness, worried thoughts and physical distress.). There is no cure for PD and 60,000 new cases are diagnosed each year in the United States alone. 

Funding Acknowledgement: 
This work was supported through a Patient-Centered Outcomes Research Institute (PCORI) Award (AD 12-11-4701). 

Disclaimer: 
All statements in this report, including its findings and conclusions, are solely those of the authors and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute (PCORI), its Board of Governors or Methodology Committee.

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