The University of Alabama at Birmingham will be part of a $40 million, landmark study of Parkinson’s disease, a neurodegenerative disorder that affects more than 1 million Americans.
The study is modeled after the recent breakthrough study of Alzheimer’s disease that has discovered ways to diagnose Alzheimer’s early, using brain scans or tests of spinal fluid.
Both the Alzheimer’s study and the upcoming Parkinson’s study share an approach that turns traditional biomedical science on its head. Usually, individual researchers or biomedical companies hoard their findings until they can publish papers or apply for patents.
The $70 million Alzheimer’s study did the opposite — clinical researchers immediately shared all the data publicly (while keeping names of patients private). The information was available to anyone with a computer around the world.
And the results, with diagnostic tests and multiple studies to test potential drugs in just six years, have already exceeded anything the researchers had imagined. This prompted the Michael J. Fox Foundation for Parkinson’s Research to back a similar study of Parkinson’s disease.
The Parkinson’s effort at UAB and 17 other medical centers across the United States and Europe will be a five-year observational study, in contrast to studies that test new drugs or treatments.
Volunteers who were recently found to have Parkinson’s will make repeated clinic visits for three to five years. They will give samples of blood, urine, cerebral-spinal fluid and DNA. They will get imaging scans of their brains, and will be tested for motor, neuropsychiatric and cognitive function.
The goal is to find so-called biomarkers for Parkinson’s disease. A biomarker is a substance or characteristic in your body that can either show the presence of disease, or show changes over time as the disease progresses.
A common biomarker example is PSA, the measurable protein in the blood that increases with prostate cancer in men.
Parkinson’s disease has no known biomarkers. Finding them would allow better diagnosis, and also give researchers a way to measure effectiveness of possible treatments for Parkinson’s.
“We’re after the biomarker,” said Dr. David Standaert, a UAB neurologist and principal investigator in the study. He said biomarkers would be valuable to measure risk of getting the disease, for definite diagnosis and to monitor how fast the disease progresses.
UAB plans to enroll 20 early-stage Parkinson’s disease patients and 10 others who do not have the disease to serve as controls. Overall, the study plans to enroll 400 Parkinson’s patients and 200 controls.
The study at UAB will require volunteers who are willing to give up a lot of time to try to help research into this poorly understood, debilitating disease, the origins of which are largely unknown. Its chronic, degenerative course causes movement disorders.
“It will take people who are altruistic,” Standaert said. “They will have to do it because they are willing to make a commitment.”
George Andrews of Mountain Brook shows the benefit a biomarker can bring. When he developed prostate cancer 11 years ago, his PSA test caught it early.
But with no test for Parkinson’s disease, he had no idea he would get the disease. It appeared in 2007 during his morning drive to work.
“The top was down; my arm was resting on the window, and it was a pretty spring day,” he said. “All at once, my thumb started twitching.”
That was the exact symptom his mother had when she first showed signs of the disease.
“If you had early detection, there are things you could do,” said Andrews, who promotes Parkinson’s support groups and other efforts by the Parkinson’s Association of Alabama across the state. “Now that I’m retired, one of my main things is to fight this disease in every way I can.”
“I hate this disease,” he said. “I saw my mother die of it. I had to spoon-feed her the last three years of her life.”
More information is available at the Michael J Fox Foundation.
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Originally reported in http://blog.al.com/spotnews/2010/08/uab_part_of_40_million_parkins.html