VARI and the Netherlands strengthen Parkinson’s collaboration


The research division of the Van Andel Institute and Netherlands-based ParkinsonNet will bring an innovative health care concept to Grand Rapids.

During the Dutch royal couple’s tour of VAI earlier this month, representatives of the Van Andel Research Institute and ParkinsonNet signed a letter of understanding to establish a ParkinsonNet in the West Michigan area in which Grand Rapids would be the main hub of the Dutch organization’s expansion in the region.

Signed by Dr. Patrik Brundin, associate director of research at VARI, Dr. Bastiaan Bloem, CEO of ParkinsonNet, and Marten Munneke, managing director at ParkinsonNet, the letter of understanding is the latest in a series of efforts to further strengthen relationships between scientists at VARI and in the Netherlands.

Brundin, professor and director of the Center for Neurodegenerative Science, and head of the laboratory of Translational Parkinson’s Disease Research at VARI, said the institute has been interested in exploring a partnership with ParkinsonNet for a while, and signing the document during the royal couple’s tour was a fantastic opportunity.

“The royal couple, or specifically the king, is very interested in Parkinson’s disease because his father had Parkinson’s, and I can say as an outsider, he is extremely excited about ParkinsonNet in particular,” said Brundin.

“It is great that this is really happening. It started as a concrete idea back at the end of November when I was fortunate to visit the annual meeting at ParkinsonNet. We sat down and talked about really trying to bring this here, and it will be a dream to get it to work.”

Bloem, who is also a professor of movement disorder neurology in the department of neurology at the Donders Institute for Brain, Cognition and Behavior at Radboud University Nijmegen Medical Centre, the Netherlands, said ParkinsonNet has been a great success in the Netherlands, delivering better care and better quality to the lives of patients at a lower cost.

“Our ambition is to help improve the lives of patients worldwide. Patrik has been a long-standing friend and colleague and, through this letter of understanding, we think we now have a unique opportunity to establish a solid foundation behind ParkinsonNet,” said Bloem.

“We can develop a more professional organization that is able to export knowledge from Holland to other countries, and begin with Grand Rapids and later to the wider Michigan area and perhaps elsewhere.”

ParkinsonNet was established in 2004 at Radboud University Medical Centre to ensure individuals with Parkinson’s disease received evidence-based, multidisciplinary care delivered by health professionals with expertise in the area. The organization established regional networks of highly motivated health professionals, and developed an information technology platform.

The innovative network connects more than 3,000 medical and health professionals in the Netherlands with individuals with Parkinson’s disease through improving access to information, according to a press release.

When building the model for ParkinsonNet, Bloem said feedback from patients was taken into consideration in terms of improving the delivery of care for Parkinson’s. Consistently mentioned were the need for: experts with a deep knowledge of the complexities of Parkinson’s disease; a multidisciplinary approach involving a team of clinicians such as physiotherapists, occupational therapists, neurologists, sex therapists and dietitians; and a patient-centered approach.

“Those are exactly the three pillars behind ParkinsonNet. It is essentially a network of individuals who specialize in treating this condition. They focus on Parkinson’s disease and become a true expert, attract a high caseload of patients, adopt a client-centered approach, and they work together as a team with other multidisciplinary professionals within that network,” said Bloem.

“That is exactly what we would like to bring to Grand Rapids.”

ParkinsonNet has had experience exporting a network to the United States in southern California, and although the development was successful, ParkinsonNet realized it was lacking a solid professional organization behind it to help maintain and ultimately expand the network to other regions, according to Bloem.

“The very first thing we will do with our colleagues in Grand Rapids is to define a solid business plan: how we can use the cost savings in health care to build a solid organization that helps to not only build the networks but also maintain and expand from there,” said Bloem.

“For that purpose, Grand Rapids should not be dependent on the Dutch. What we aim to do is build a group of experts within Grand Rapids.”

With the creation of a business plan in progress, Brundin said people in the community already are showing interest in ParkinsonNet.

“It is not just driven by us, but clearly people have understood the need from the patient side and therefore are ready to step up and make it possible,” said Brundin.

“I think so many patients would benefit and, of course, in the long-term the research would benefit, which ultimately is of great benefit to the patients in turn. I can see lots of win-win situations in this.”

Between seven and 10 million individuals throughout the world have Parkinson’s disease and approximately 60,000 Americans are diagnosed with the progressive, neurodegenerative condition each year, according to the Parkinson’s Disease Foundation.

Currently, there are limited treatment options and a number of barriers to expert care due to distance between patients and clinicians, or because of low access to research studies.

“Patients with Parkinson’s disease are generally very interested in participating in research; there are questionnaires performed that suggest over 80 percent really want to be involved in research, but very few patients can access research studies — as few as 10 percent,” said Brundin.

“I think ParkinsonNet will help the people in West Michigan, and later on in other parts of the United States, gain access to research if they want to, and this will, of course, help us be able to do more studies on clinical materials.”

With a number of patients in West Michigan and northern Michigan having limited access to expert clinicians, Brundin said the partnership with ParkinsonNet will also help connect people with specialists in a number of health care disciplines.

“This will mean they live better lives and have fewer complications,” said Brundin.

By leveraging the multidisciplinary team of professionals within a ParkinsonNet network, individuals received better quality of care and the risk for secondary complications is lowered, according to Bloem.

“The number of hip fractures, for example, has gone down by 50 percent in the Netherlands, which is an amazing figure, I think. The number of hospital admissions has gone down significantly and as a result, health care costs have actually gone down,” said Bloem. “Costs have gone down and disease complications have gone down, and that is truly what people label as value-based care.”

Facebook Comments