The Parkinson's Progression Markers Initiative (PPMI) is a landmark five-year clinical study aiming to identify biomarkers of Parkinson's disease progression, supported by The Michael J. Fox Foundation. People recently diagnosed with PD who are not currently taking medications are needed — and so are individuals who have neither PD, nor a close relative with PD, to serve as controls. This study has 16 sites around the country and several abroad. I had a jump for joy when I got wind of the following news:
Cleveland Clinic picked for study in Parkinson's
Cleveland Clinic recently was selected as a site for the Parkinson's Progression Markers Initiative (PPMI), a landmark five-year research study sponsored by the Michael J. Fox Foundation that aims to identify biomarkers of the disease.
PPMI is the first large-scale international research study exclusively focused on establishing the scientific infrastructure necessary to develop Parkinson's disease biomarkers. A biomarker is a substance, process or characteristic in our bodies that is associated with the risk or presence of a disease, or that changes over time in a way that can be linked to the progression of a disease.
Reliable and consistent biomarkers would allow scientists to predict, objectively diagnose and monitor diseases and definitively determine which medications work and which will not. There is no known biomarker for the progression of Parkinson's.
"Finding a biomarker would be a major game changer, because it could establish a critical endpoint for knowing the effectiveness of drugs. These are concrete ways to demonstrate that a treatment is, or is not, impacting the disease process in Parkinson's patients, as opposed to simply impacting disease symptoms," said Dr. Hubert Fernandez, head of movement disorders in the Center for Neurological Restoration at Cleveland Clinic, and site Principal Investigator for the PPMI study.
Each study site needs to enroll 20 Parkinson's patients who are on no PD medications and 10 controls which means folks without Parkinson's disease (or a first degree relative). The sooner we get the needed people the sooner we will have some very important answers. As it turns out, the biggest hurdle to getting research done and published is the lack of study participants.
But this will not be the case in Cleveland! I must have done something right in my life, because I have had a remarkable outpouring of support from family, friends and patients....so I want to thank Marc, Will, Kim, Michelle, Tuck, Michael, Clark, Mary, Aaron and Mark all of whom "made the call". I hope you all have an easy time of it....you have given not only me but many other people hope that this study will get the answers we so desperately need.
Now it doesn't take a neurosurgeon to figure out that these 10 people are not all that we need. So if you would like to be added to the list of people that I will forever be indebted to...please make the call. The phone number and website are on the banner at the top of this page. And, if you are lucky enough to live in Cleveland, you will have the distinct privilege of being taken care of by Dr Hubert Fernandez himself....all-around super nice guy!
At the end of the day, I marvel at the fortune I have found since being handed this diagnosis. With the support I have received from my doctors, family, friends and patients, there isn't a day that I lose sight of my future....and a cure.
karen
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