Fall / Winter 2020 | Research 9
Newly Diagnosed Individuals Hold the Key to Unlocking Parkinson ’ s Discoveries
These populations have helped build the most robust data set and biospecimen library in Parkinson ’ s research . The pharmaceutical industry has noted the value of PPMI with its funding ; 30 companies have supported the study . And scientists rely on the pristine PPMI resources for their own research , downloading the open-access deidentified data more than 6 million times . Drug developers look to PPMI for standard methods and data calculations to help plan their trials . And analysis has led to new findings around the disease such as changes on a dopamine brain scan in the years after diagnosis and lower levels of some proteins in spinal fluid .
PPMI is now poised for even greater impact . This expansion is a watershed moment in the life of the initiative , since larger and more diverse study populations are directly linked to faster , better scientific outcomes .
Processing a Parkinson ’ s disease ( PD ) diagnosis can be overwhelming . Earlier this year , The Michael J . Fox Foundation published a resource — If I Knew Then What I Know Now : A Guide for People Newly Diagnosed with Parkinson ’ s — to answer your questions about navigating PD and how to take control of it . In the guide , ESPN founder and Foundation Patient Council member Bill Rasmussen shares his perspective :
“ Life isn ’ t about the obstacles you may encounter , it ’ s how you figure out a way around them . I think of my Parkinson ’ s this way . My diagnosis was a relief . Ultimately , I thought it was better to know my disease , to give it a name and to meet the challenge head on .”
One way to meet this challenge is by participating in research . Research on the progression of PD is best carried out in patients so recently diagnosed that they are not yet taking medicine . Scientists are searching for insights to understand early disease processes that may be our best hope to slow or stop the disease in its tracks . And you could hold the key .