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Building Upon Research Leadership in Rating Scales: A Key to Studying Early Parkinson’s Disease Progression
Dr. Goetz and his collaborators are now advancing research — utilizing sophisticated statistical modeling techniques — to better identify salient items in the MDS-UPDRS that are most subject to change in the very first phases of Parkinson’s disease. Their aim is to identify a shorter inventory that can be used to chart the impact of new interventions targeted at slowing the natural progression of the disease in the first five years after diagnosis.
To characterize the severity of Parkinson’s disease in each patient, doctors rely on rating scales — validated tools that measure the motor and nonmotor symptoms of the disease and the effect they have on a person’s daily living. In the clinic, rating scales are essential for tracking disease progression. In clinical trials and research, they are invaluable for studying the benefits of therapeutic interventions.
“Our analyses may also reveal powerful indicators of presymptomatic Parkinson’s disease,” Dr. Goetz said. “Such items could be assessed in large populational or epidemiological studies aimed at identifying the disease earlier than is now possible.”
Although the first rating scales emerged in the 1960s, RUSH’s Christopher Goetz, MD, a pioneer in developing and refining these tools through research, gives credit to the teachings of a French neurologist who practiced more than 100 years prior.
Seeking Relief for Apathy Following DBS Treatment: Notes From the Lab of Alana Kirby, MD, PhD
“Today’s specialists owe a great deal to Jean-Martin Charcot, the most celebrated neurologist of the time, whose core observations related to Parkinson’s disease in the 19th century pushed physicians to define the many distinct features of the disease,” Dr. Goetz said. “Charcot’s teachings remind us that patients’ manifestations of Parkinson’s disease are always unique, individualized and highly personal in terms of priorities and nuances.”
When people with Parkinson’s disease receive deep brain stimulation, or DBS, to treat motor symptoms of the disease, apathy — loss of motivation that is a common nonmotor symptom — can worsen after treatment. Alana Kirby, MD, PhD, assistant professor in the Department of Neurological Sciences, and T. Celeste Napier, PhD, professor in the Department of Psychiatry and Behavioral Sciences, have partnered to seek solutions for patients who experience these troubling symptoms.
In 2008 Dr. Goetz led the international effort to better capture the uniqueness of each patient’s disease in rating scales. This resulted in the Movement Disorder Society Unified Parkinson’s Disease Rating Scale, or MDS-UPDRS, now the most widely used international measure of Parkinson’s disease severity. The MDS-UPDRS has been officially translated into 25 non-English languages.
“People with apathy still enjoy doing things, but it’s harder for them to get going,” Dr. Kirby said. “Positive things don’t seem to be as necessary to pursue. Negative things don’t seem
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