12 Fox Focus | Research
PPMI : With Help from Everyone , Achieving Goals Faster ( continued )
Since the study ’ s expansion , more than 50 sites ( including a new site in Lagos , Nigeria ) are recruiting an additional 1,000 newly diagnosed volunteers to join in contributing valuable data and biological samples .
“ Learning you have Parkinson ’ s can be frightening , and few people are thinking about clinical studies ,” says PPMI Principal Investigator Ken Marek , MD . “ When people are diagnosed , they often first ask , ‘ What can I do ?’ Probably the most important thing people can do is join a research study like PPMI . People can make valuable contributions to research toward better treatments and cures .”
In fact , the earliest months and years with PD are a fleeting window when your participation in studies may provide greater value to research than in any subsequent time in the Parkinson ’ s journey . MJFF often hears from patients and families who did not get involved during this critical time and later came to wish they had done so .
Reaching Those “ At Risk ” for Parkinson ’ s
In addition to seeking individuals age 60 and up with smell deficits , PPMI also is enrolling people with other risk factors : acting out dreams while asleep ( REM sleep behavior disorder or RBD ) or having a genetic mutation linked to the disease . Enrolling people with these risk factors — a goal of 2,000 new volunteers in this group — will allow scientists to start the first prevention therapy trials .
For Otis Peeples , 71 , a retired police sergeant and current behavioral health therapist in
Chicago , Illinois , participating in a Parkinson ’ s research study offered a unique opportunity to help him learn more about his own risk for the disease . His wife , Linda , noticed he was acting out his dreams . He would punch , wrestle and talk while asleep . When Peeples was diagnosed with RBD and learned about its connection to Parkinson ’ s , he took action and joined PPMI .
“ Maybe that will be my purpose : to help find a cure for this disease ,” says Otis .
Gathering Data on Health and Disease
Otis Peeples , pictured with his wife , Linda , has learned about his risk for PD from PPMI .
While PPMI is aiming to connect with people recently diagnosed and with certain risk factors , the study has opened to anyone over age 18 in the United States . Volunteers — with and without PD — can add to the study through its online platform , sharing information on health and disease over time . The more PPMI captures about brain health and aging , the faster science can move to cures .
PPMI is making progress in its ambitious goals , but many more volunteers are needed . However you have been touched by Parkinson ’ s , you can make a difference in ending it .