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Netherlands Public-Private Partnership to Launch Comprehensive, Observational Study of Parkinson's Disease

The 44,000 Dutch citizens currently living with Parkinson's disease may gain a better understanding of their disease in the near future

Radboud University Medical Center, Radboud University, ParkinsonNet, and Verily Life Sciences (an Alphabet Company) are initiating a study with 650 Parkinson’s patients to examine the disease and its progression over the course of two years. The purpose of the study is to gain insights into the origins of the disease and disease progression at an individual level that will potentially provide a foundation for new and more personalized treatments. The study will use state-of-the-art techniques, including sophisticated molecular analyses, advanced brain imaging, and wearable devices with sensors capable of measuring various types of data in the home situation, such as vital signs and activity level, making it possible to perform in-depth analysis and characterization of the disease.

"The disease symptoms, disease progression, and treatment response in Parkinson’s disease vary considerably among patients. Currently, we don't understand what causes these differences and therefore we cannot offer patients a treatment plan that is tailored to their individual needs. New insights are urgently needed," said Bastiaan Bloem, M.D., Ph.D., Professor of Neurological Movement Disorders and Founder of ParkinsonNet. "We are therefore launching a large-scale study that is expected to provide these insights into Parkinson's disease. We plan to use this new knowledge to offer Parkinson's patients the best possible treatment plan, ideally one that is tailored to their individual needs."

This partnership combines the expertise of leading researchers at Radboud University Medical Center and Radboud University, ParkinsonNet’s unique infrastructure, and Verily’s advanced research tools and analytic methods. The Dutch association for Parkinson's patients will also be closely involved. In addition to funding from the core partners, the initiative will be financially supported by the Topsector Life Science & Health, the Province of Gelderland, and the Municipality of Nijmegen.

“We are excited to bring Verily’s unique tools and technology to this collaboration in order to more deeply understand Parkinson’s disease and discover new insights,” commented Jessica Mega, M.D., M.P.H., chief medical officer of Verily. “This partnership is illustrative of our commitment to Parkinson’s disease and other neurological disorders, such as multiple sclerosis. We are working with leading researchers on studies like this one to better understand disease progression and to improve the lives of patients.”

Research data will be securely stored and shared with researchers using an advanced method called PEP (Polymorphic Encryption and Pseudonymisation), developed by Professors Bart Jacobs and Eric Verheul of the Digital Security Group at the Institute for Computing and Information Sciences at Radboud University. This method makes it possible to share research findings securely, while maximally guaranteeing the privacy of the participants. The PEP method also makes it possible to share pseudonymised research data with other leading researchers around the world.

“This project is unique because we, as independently funded computer security researchers, are providing a state of the art infrastructure that enables the type of large scale medical research exemplified by this new Parkinson study,” said Professor Bart Jacobs. “We believe that the PEP method could have many applications for distributed teams collaborating with sensitive data, and we intend to open source this technology so that it can be used by organizations at the forefront of driving enhanced privacy and security protocols.”

Researchers from all participating Dutch hospitals will be given the opportunity to carry out their own studies on Parkinson's disease using the data collected. Parkinson's researchers from other countries can also be granted access to this data after submitting a research proposal. The researchers hope this wide form of secure and privacy-friendly information sharing will help accelerate the research on Parkinson's disease.

Key partners

Radboud university medical centre
Radboud university medical centre is a leading academic center for patient care, education, and research, with the mission ‘to have a significant impact on healthcare.’ Our activities help to improve healthcare and consequently the health of individuals and of society. We believe we can achieve that by providing excellent quality, participatory and personalized healthcare, operational excellence, and by working together in sustainable networks.

ParkinsonNet is an initiative of Radboud University Medical Centre and was founded in 2004. It is a professional healthcare and research network covering all of the Netherlands. ParkinsonNet brings healthcare professionals together and facilitates Parkinson-specific specialization, interdisciplinary collaboration, and exchange of knowledge. All national Parkinson centers (including all university medical centers) and all community hospitals participate in ParkinsonNet. ParkinsonNet has received multiple national and international awards for its scientifically proven ability to improve the quality of care and as unique infrastructure for launching large-scale clinical studies, with easy access to subjects and professionals across the country.

The success of the ParkinsonNet also receives a lot of interest internationally. In 2014 Kaiser Permanente began to implement their own ParkinsonNet in Southern California with support from ParkinsonNet. Recently they decided to implement the concept across the entire organization. In the same year a first network in the Duisburg region has started.

Radboud University
At Radboud University, we do research and teach programs covering the full breadth of the academic spectrum. We do this on a green, modern campus with state-of-the-art facilities. The atmosphere on campus is open and personal, which stimulates colleagues to share their knowledge beyond the boundaries of their own discipline. It encourages all to look further, to see more. Thus, Radboud University contributes to the development of new perspectives. Within science and within society. This makes Radboud University successful and of international importance.

Verily is a life sciences research and engineering organization focused on improving healthcare outcomes by applying the latest scientific and technological advances to significant problems in health and biology. By combining unparalleled capabilities in data organization and analytics services with robust scientific and product engineering expertise, Verily is targeting the dual objectives of creating tools and user-friendly platforms that capture a deeper and broader set of health data, and organizing the data so that it is useful and actionable. Verily partners with leading life sciences, medical device, and government organizations to leverage deep domain expertise and resources that enable exponentially faster development, meaningful advancements, and deployment at scale.

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