Welcome!

News Feed Item

Parkinson's Disease Foundation Calls Upon Research Professionals to Engage Patient Advocates in Speeding Drug Development

Volunteer Network Has Track Record of Improving Trial Recruitment, Removing Research Roadblocks

NEW YORK, March 7, 2014 /PRNewswire-USNewswire/ -- The Parkinson's Disease Foundation® (PDF®) invites research professionals within industry, academia and government, to partner with its trained patient advocates to bring about better treatments for Parkinson's disease.  This week, PDF welcomes new members to its national network, which now includes more than 230 Research Advocates whose insights are critical to speeding drug development.

Logo

In the past five years, more than 400 research professionals have engaged PDF Research Advocates in setting research priorities, designing clinical trials and increasing study enrollment.  These partnerships have led to, among other outcomes, 700 people enrolling in clinical studies to advance Parkinson's disease science. 

This week, more than 30 people with Parkinson's disease and care partners are undergoing training to join the network. 

"I urge my colleagues in the field of Parkinson's disease research to work with these unique individuals.  It is incredibly effective," said Claire Henchcliffe, M.D., D.Phil., faculty member for the program, Director of the PDF Research Center at Weill Cornell Medical College, and associate professor of neurology and neuroscience in the Feil Family Brain and Mind Research Institute at Weill Cornell Medical College in New York, NY.  "In my experience, PDF Research Advocates can enhance our work by bringing an understanding of what it means to live with Parkinson's disease."

Linda M. Morgan, M.B.A., R.Ph., a PDF Research Advocate from Asheville, NC, who also serves as a faculty member for the program, added, "The community is increasingly recognizing the importance of the patient's voice.  We want research professionals to know that, thanks to PDF's training and support, we are ready to hit the ground running to improve trials and solve Parkinson's disease."

PDF invites research professionals in the field of Parkinson's disease to contact us for information on partnering with PDF Research Advocates by calling (800) 457-6676, emailing [email protected] or visiting www.pdf.org/pair.   

PDF invites people with Parkinson's disease and their loved ones to get involved by completing its free Parkinson's Advocates in Research online course at www.pdf.org/paironline.

About Parkinson's Disease
Parkinson's disease is a progressive neurological disorder that affects nearly one million people in the US.  Although promising research is being conducted, there is currently no cure for Parkinson's disease.

About Parkinson's Advocates in Research 
As a signature program of PDF, Parkinson's Advocates in Research (PAIR) is bringing together the people who live with Parkinson's disease and the people who are developing new therapies with one goal: better treatments at a faster pace.  Through in-person trainings and an online course, the PAIR program provides people touched by Parkinson's disease with the skills needed to pair up with scientists and health professionals.  By collaborating with research institutions, the PAIR program facilitates partnerships between Research Advocates and professionals at the frontlines of research.  The cornerstone of the program is a national network of more than 230 Research Advocates from 42 states who speed drug development, increase trial participation and inform the Parkinson's disease community about research.  Learn more at www.pdf.org/pair.

About Parkinson's Disease Foundation® 
The Parkinson's Disease Foundation® (PDF®) is a leading national presence in Parkinson's disease research, education and public advocacy.  PDF is working for the nearly one million people in the US who live with Parkinson's disease by funding promising scientific research while supporting people living with Parkinson's through educational programs and services.  Since its founding in 1957, PDF has dedicated over $100 million to fund the work of leading scientists throughout the world and over $42 million to support national education and advocacy programs. 

Logo - http://photos.prnewswire.com/prnh/20111101/DC97663LOGO

SOURCE Parkinson's Disease Foundation

More Stories By PR Newswire

Copyright © 2007 PR Newswire. All rights reserved. Republication or redistribution of PRNewswire content is expressly prohibited without the prior written consent of PRNewswire. PRNewswire shall not be liable for any errors or delays in the content, or for any actions taken in reliance thereon.

Latest Stories
20th Cloud Expo, taking place June 6-8, 2017, at the Javits Center in New York City, NY, will feature technical sessions from a rock star conference faculty and the leading industry players in the world. Cloud computing is now being embraced by a majority of enterprises of all sizes. Yesterday's debate about public vs. private has transformed into the reality of hybrid cloud: a recent survey shows that 74% of enterprises have a hybrid cloud strategy.
Manufacturers are embracing the Industrial Internet the same way consumers are leveraging Fitbits – to improve overall health and wellness. Both can provide consistent measurement, visibility, and suggest performance improvements customized to help reach goals. Fitbit users can view real-time data and make adjustments to increase their activity. In his session at @ThingsExpo, Mark Bernardo Professional Services Leader, Americas, at GE Digital, discussed how leveraging the Industrial Internet and...
SYS-CON Events announced today that delaPlex will exhibit at SYS-CON's @CloudExpo, which will take place on June 6-8, 2017, at the Javits Center in New York City, NY. delaPlex pioneered Software Development as a Service (SDaaS), which provides scalable resources to build, test, and deploy software. It’s a fast and more reliable way to develop a new product or expand your in-house team.
Web Real-Time Communication APIs have quickly revolutionized what browsers are capable of. In addition to video and audio streams, we can now bi-directionally send arbitrary data over WebRTC's PeerConnection Data Channels. With the advent of Progressive Web Apps and new hardware APIs such as WebBluetooh and WebUSB, we can finally enable users to stitch together the Internet of Things directly from their browsers while communicating privately and securely in a decentralized way.
"Matrix is an ambitious open standard and implementation that's set up to break down the fragmentation problems that exist in IP messaging and VoIP communication," explained John Woolf, Technical Evangelist at Matrix, in this SYS-CON.tv interview at @ThingsExpo, held Nov 4–6, 2014, at the Santa Clara Convention Center in Santa Clara, CA.
Information technology (IT) advances are transforming the way we innovate in business, thereby disrupting the old guard and their predictable status-quo. It’s creating global market turbulence. Industries are converging, and new opportunities and threats are emerging, like never before. So, how are savvy chief information officers (CIOs) leading this transition? Back in 2015, the IBM Institute for Business Value conducted a market study that included the findings from over 1,800 CIO interviews ...
Web Real-Time Communication APIs have quickly revolutionized what browsers are capable of. In addition to video and audio streams, we can now bi-directionally send arbitrary data over WebRTC's PeerConnection Data Channels. With the advent of Progressive Web Apps and new hardware APIs such as WebBluetooh and WebUSB, we can finally enable users to stitch together the Internet of Things directly from their browsers while communicating privately and securely in a decentralized way.
"We host and fully manage cloud data services, whether we store, the data, move the data, or run analytics on the data," stated Kamal Shannak, Senior Development Manager, Cloud Data Services, IBM, in this SYS-CON.tv interview at 18th Cloud Expo, held June 7-9, 2016, at the Javits Center in New York City, NY.
While DevOps most critically and famously fosters collaboration, communication, and integration through cultural change, culture is more of an output than an input. In order to actively drive cultural evolution, organizations must make substantial organizational and process changes, and adopt new technologies, to encourage a DevOps culture. Moderated by Andi Mann, panelists discussed how to balance these three pillars of DevOps, where to focus attention (and resources), where organizations might...
Zerto exhibited at SYS-CON's 18th International Cloud Expo®, which took place at the Javits Center in New York City, NY, in June 2016. Zerto is committed to keeping enterprise and cloud IT running 24/7 by providing innovative, simple, reliable and scalable business continuity software solutions. Through the Zerto Cloud Continuity Platform™, organizations can seamlessly move and protect virtualized workloads between public, private and hybrid clouds. The company’s flagship product, Zerto Virtual...
Some people worry that OpenStack is more flash then substance; however, for many customers this could not be farther from the truth. No other technology equalizes the playing field between vendors while giving your internal teams better access than ever to infrastructure when they need it. In his session at 20th Cloud Expo, Chris Brown, a Solutions Marketing Manager at Nutanix, will talk through some real-world OpenStack deployments and look into the ways this can benefit customers of all sizes....
Extreme Computing is the ability to leverage highly performant infrastructure and software to accelerate Big Data, machine learning, HPC, and Enterprise applications. High IOPS Storage, low-latency networks, in-memory databases, GPUs and other parallel accelerators are being used to achieve faster results and help businesses make better decisions. In his session at 18th Cloud Expo, Michael O'Neill, Strategic Business Development at NVIDIA, focused on some of the unique ways extreme computing is...
The explosion of new web/cloud/IoT-based applications and the data they generate are transforming our world right before our eyes. In this rush to adopt these new technologies, organizations are often ignoring fundamental questions concerning who owns the data and failing to ask for permission to conduct invasive surveillance of their customers. Organizations that are not transparent about how their systems gather data telemetry without offering shared data ownership risk product rejection, regu...
Due of the rise of Hadoop, many enterprises are now deploying their first small clusters of 10 to 20 servers. At this small scale, the complexity of operating the cluster looks and feels like general data center servers. It is not until the clusters scale, as they inevitably do, when the pain caused by the exponential complexity becomes apparent. We've seen this problem occur time and time again. In his session at Big Data Expo, Greg Bruno, Vice President of Engineering and co-founder of StackIQ...
The security needs of IoT environments require a strong, proven approach to maintain security, trust and privacy in their ecosystem. Assurance and protection of device identity, secure data encryption and authentication are the key security challenges organizations are trying to address when integrating IoT devices. This holds true for IoT applications in a wide range of industries, for example, healthcare, consumer devices, and manufacturing. In his session at @ThingsExpo, Lancen LaChance, vic...