Fall / Winter 2022 | Research 11
PPMI : With Help from Everyone , Achieving Goals Faster
By Christina Destro
Ken Marek , MD , leads MJFF ’ s Parkinson ’ s Progression Markers Initiative as principal investigator .
Emerging findings from The Michael J . Fox Foundation ’ s landmark Parkinson ’ s Progression Markers Initiative ( PPMI ) are helping researchers build a dynamic study to explore and better treat the spectrum of Parkinson ’ s disease . Enrolling people diagnosed decades ago alongside the newly diagnosed and even those who have not been diagnosed but may be at risk for Parkinson ’ s , PPMI is building a network of volunteers and scientists to speed new therapies .
This real-time strategy for discovery came into play over recent months . Analysis of data contributed by more than 20,000 individuals who had enrolled in PPMI ’ s online study showed smell loss is one of the most important signals of risk for Parkinson ’ s disease . The study quickly pivoted to a new strategy to rigorously test the olfactory ( smell ) sense of tens of thousands of older adults who do not have Parkinson ’ s . ( If you are 60 or older and do not have Parkinson ’ s , please visit
mysmelltest . org / FoxFocus to get started .)
Critical findings like this are coming from an influx of data since PPMI ’ s expansion in 2021 . Since it first launched in 2010 , PPMI has been an extraordinary open source of data for researchers . Today PPMI offers varied ways for the Parkinson ’ s community to join the study that could change everything . More than 28,000 volunteers are sharing information online . And more than 1,200 are participating in person at medical centers across the world .
Calling on the Newly Diagnosed
PPMI has a particular need for people recently diagnosed with Parkinson ’ s who are not yet taking PD medication . ( If this is you , please visit
michaeljfox . org / newly-diagnosed to learn more and volunteer today .) Enrolling people early in their disease allows the study to plot biology and experience , from the earliest signs of Parkinson ’ s through its later stages . The initiative is still following hundreds of its first participants , now more than 10 years from their diagnosis . These early volunteers have contributed to new tests and knowledge that may help diagnose disease and predict symptoms such as memory and thinking problems .