April 2010 E-Newsletter - PARS Study: Using Smell to Detect Changes in the Brain

     It is widely known throughout the Parkinson's community that one's sense of smell can be greatly affected by the disease.  Once thought to be a purely motor-related disease, symptoms ranging from sleep disorders to cognitive impairment are now thought to be related to Parkinson's disease.  The sense of smell is also listed among these other, less-known symptoms, and now scientists are studying this connection.
Lead by a collaborative team of researchers from the Institute for Neurodegenerative Disorders and the Movement Disorders Center at the University of Pennsylvania, the Parkinson Associated Risk Study (PARS) aims to test individuals for early warning signs of Parkinson's and other neurological diseases.  Supported by a grant from the Neurotoxin Exposure Treatment Parkinson's Research (NETPR) program run by the Department of Defense, the PARS study is looking for predictors in people both related and unrelated to those living with Parkinson's.
"We are studying the loss of smell as a precursor for Parkinson's disease," said Susan Mendick, MPH, Director of Clinical Imaging Programs Management at Molecular NeuroImaging, LLC and the Institute for Neurodegenerative Disorders.  "Initially we wanted first-degree relatives, but we soon found no difference between relatives and someone who doesn't have a relative (with Parkinson's).  We really want people over the age of 60, but people with a family member may be eligible if under age 60."
The goal of the study is to further assess people who have poor smell with brain imaging studies to detect very early changes in dopamine in the brain that might be present even before any symptoms occur.  This way people who are at risk for Parkinson's disease might be identified and evaluated over a five year period.  Eventually the research team might use this approach to test drugs that might prevent the development of Parkinson's in people who are at risk for the disease.
Study participants simply go to the PARS Web site, www.parsinfosource.com, and fill out a brief form.  The form can also be printed out and mailed back to the researchers, or participants can also contact the team and request a form be mailed to them.  The research team will then determine if that person is eligible for the study.  If the person is, a packet including a longer questionnaire and a smell test will be mailed to the participant.  Once these tests and materials are completed, they can simply be mailed back to the research team.  Finally, further evaluations may be needed if the participant is chosen by the research team.
"We have screened over 10,000 people," said Mendick.  "Five-thousand smell tests have been returned, and about 300 people have undergone imaging and are being followed in the study for further evaluation for five years.  We hope to increase this number to between 400 and 450," she added.
This group of 300 study participants will be evaluated over five years, many at research centers in their local communities.  If further funding is secured, the study team hopes to continue evaluating this smaller group beyond the five year period.
Developing a process with a simple test like smell testing followed by a more complicated test like dopamine imaging that could be used to detect who might be at risk for Parkinson's would be very helpful in identifying and testing new treatments for the disease.
"The best way to help is by going to our Web site and filling out the form," said Mendick.  This study is an opportunity for those who do not currently have Parkinson's to help to find new diagnostic tests and eventually new therapies for the disease.
Visit www.parsinfosource.com or call 1-877-401-4300 for more information on the study.  Fill out the form online or request a form be mailed to you.  By taking a few minutes of your time, you may be involved in a novel Parkinson's study to help researchers better understand the disease.
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