You may have heard: Following successful recruitment of the original groups needed for The Parkinson's Progression Markers Initiative (PPMI), the study is expanding, and focusing new resources on a cohort that has risk factors for developing PD to learn more about potential biomarkers of Parkinson’s disease progression that may be taking place early in the disease process before a person is even diagnosed with the disease.
This new study arm is focused on three early symptoms of PD: reduced sense of smell (hyposmia); rapid eye movement sleep behavior disorder (RBD); and a mutation in the LRRK2 gene (the single greatest genetic contributor to PD known to date). The study will conduct similar tests and collect the same biospecimens in these individuals as is currently done in PPMI, with the end goal of leading scientists to detect the presence of Parkinson’s earlier, and to develop treatments for patients that have the potential for slowing disease progression and delaying the onset of motor symptoms.
Here is some more information on how you can be a part of or help identify people in each of these key groups:
Smell Deficit:
Loss of sense of smell is a common but little noticed symptom that may occur years before the onset of motor symptoms or a PD diagnosis. Testing the sense of smell may serve as marker of Parkinson’s disease in its earliest stages. PPMI seeks 10,000 people over the age of 60 who do not have Parkinson’s to take a simple smell survey online.
Refer a friend to take the smell survey
RBD:
Many people with Parkinson’s have trouble sleeping. One particular sleep disorder that is associated with PD called REM Sleep Behavior Disorder (RBD) may hold critical clues to what’s taking place in the course of the disease before the motor symptoms occur. Individuals with RBD who are at least 60 years of age, and who have not been diagnosed with PD, are being considered for participation in PPMI at select study sites. Click here to find a listing of participating sites.
LRRK2 Mutations:
Today, LRRK2 is considered to be the single most common genetic contributor to PD, and PPMI seeks to follow individuals with a LRRK2 mutation to determine if the changes taking place in its ‘molecular machinery’ could provide a Parkinson’s biomarker. Individuals who are 60 or older, do not have a diagnosis of PD but have a first degree relative who does, and know they have a LRRK2 mutation are invited to learn more at www.michaeljfox.org/ppmi/genetics. Individuals in the Boca Raton area and who are of Eastern European (Ashkenazi) Jewish descent are invited to receive counseling and genetic testing at the PPMI site in Boca Raton, FL. If you do not have PD but have a first degree relative who does, are over the age of 60 and know you are LRRK2+, complete this online form to be contacted by a site.