Despite centuries of effort, there are no established ways to slow, stop, reverse, or prevent parkinsonism. We believe part of the problem is the way in which studies have been conducted. Our priority is whether it works for real-people in a real-world environment.
Upon completion of a pragmatic trial, patient and providers should have new information that can immediately inform their choices. The goal of pragmatic research is not to understand 'why' or 'how' something works, but whether it is available, tolerable, and effective.
For over 200 years, PD has been defined by what the health care provider can observe, not by what person with PD experiences, All of our studies include patient-reported outcomes (PRO) and quality of life measurements. The patient experience IS the gold standard.
Identification of individuals during the prodromal stage is a key part of our strategy. Using dogs to identify the scent of parkinsonism, we are working to identify people BEFORE developing motor symptoms.
The symptoms of parkinsonism can fluctuate, and some can improve while others get worse. The PRO-PD App allows patients, providers, and researchers the ability to monitor change in symptoms over time.
Success is defined by patient-reported improvement. Priority will go to therapies that are immediately available, effective, affordable, and tolerable.
The earlier treatment is initiated, the greater the potential benefit.
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Seattle, WA 98133
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