Several international studies on Parkinson’s disease are starting in Nijmegen, the Netherlands. For example, via the Michael J. Fox Foundation (the American actor known for Back to the Future, among other works), it is investigating whether patients would benefit from a short oxygen deprivation to suppress symptoms.
Personalized Parkinson Project
Several studies link up with the successful Personalized Parkinson Project. This is a collaboration between the Radboudumc (academic medical center) in Nijmegen and the American technology company Verily. Patients with a diagnosis of Parkinson’s disease (in an even earlier phase of the disease, i.e. with a disease duration of up to five years) are given a smartwatch that collects data 24 hours a day for a period of two years. A lot of other medical information is also collected from all the participants. For example, blood values, stool and cerebrospinal fluid are examined, and an advanced brain scan is performed.
“The Personalized Parkinson Project has been running since 2017. It is accessible to recently diagnosed patients but also to patients who have had the disease for a longer time. It provides an incredibly rich source of information and knowledge,” says Bas Bloem, a neurologist at Radboudumc in Nijmegen and founder of ParkinsonNet. This is a national network of approximately 3,500 healthcare providers who specialize in Parkinson’s disease.
Subscribe to our Newsletter!
“We have been working on the Personalized Parkinson Project for almost five years now, and 98 percent of the 500 patients are still taking part,” Bloem says. “That’s obviously an insanely high percentage.” For example, the smartwatch provides information about how patients move around in their own homes or the quality of their sleep. “We therefore get a better picture of how someone is doing and how the disease is progressing.” Parkinson’s disease has a wide variety of symptoms. At the moment, doctors do not yet fully understand what causes these differences. The Personalized Parkinson Project hopes to change that.
Jumping on the bandwagon
The success of the Personalized Parkinson Project is now attracting other international studies and research. “It’s a kind of bandwagon effect. We’ve built up a solid reputation and that’s now paying off,” says Bloem. “We can quickly enroll new patients who are suitable for the various studies. And we can monitor those patients very closely.”
This summer, an international study into a new drug for treating Parkinson’s disease will start via the Personalized Parkinson’s Project. This so-called Orchestra study will research whether the drug from the pharmaceutical company UCB can slow down the progression of Parkinson’s disease or whether it can prevent new symptoms from appearing. The study involves patients who have already been diagnosed with Parkinson’s disease but are not yet taking any medication for it. This is the first time that the drug will be tested on a large scale in the clinical phase.
In addition, the Talisman study is starting up through the Michael J. Fox Foundation. This study will look at whether patients would benefit from a short-term lack of oxygen to suppress the symptoms of the disease, and possibly even to slow down the progression of the disease. Actor Michael J. Fox himself found that at high altitudes, where there is less oxygen in the air, he suffered less from his Parkinson’s symptoms. Bloem: “Short-term oxygen deprivation gives the brain a stimulus to release extra dopamine and that may also suppress some Parkinson’s symptoms. Whether this may have a (long-term) effect is being researched in this study.”
Bloem can name a few more studies that will soon be rolled out from Nijmegen. “The Heads-Up trial is also a good one. Some patients with Parkinson’s disease faint fairly regularly. There are now indications that it can help to sleep with the head in an upright position at at night. For example, by placing a few blocks of wood under the head end of the bed. This is now undergoing scientific research as well.”
The Personalized Parkinson’s Project smartwatch is currently only being used for research purposes. At the end of this year, the observational studies of patients in various stages of the disease will be completed. Bloem: “In the short term, we want to use the smartwatch as a kind of thermometer to measure the progression of Parkinson’s disease. Over the slightly longer term, we want to offer the smartwatch as part of regular care to patients. If you have more knowledge about the development of the disease, the treatment plan can be tailored much better to the patient themselves.”
You can read more IO articles on Parkinson’s Disease here.