The Michael J. Fox Foundation for Parkinson’s Research is an amazing organization that is at the forefront of research on Parkinson’s disease. One of their initiatives—the Parkinson’s Progression Markers Initiative, or PPMI—gives the opportunity for anyone to participate in a study that can help pinpoint the causes and potential cures of this progressive and devastating disease. The PPMI is basically a big-data medical history study. With a total desired sample size of half a million participants, the PPMI wants you to be a part of the study! Whether you have a family history of Parkinson’s or not, whether you have been diagnosed with Parkinson’s or not—the PPMI wants you and your (anonymized) medical history. All you need is an interest in helping scientists figure out a solution to Parkinson’s!
I care deeply about helping these scientists, especially as my dad and my grandfather have both suffered from Parkinson’s disease. But I wasn’t able to sign up for the PPMI while living abroad. Now that we are back home in the US, I am able to sign up online for the PPMI! There are no physical components of the PPMI, no need to go into a doctor’s office to give a blood or urine sample or anything like that. It is basically a large-scale, longitudinal study that aims to ask the same people the same questions over a long period of time in order to build a database that connects certain demographic markers (such as age, sex, race and ethnicity, genetic history, education, and economic status) with the progression of certain health symptoms. The more people who participate, the better the quality of the data correlations!
It’s important to note that the PPMI is approved by an Institutional Research Board (IRB). All scientific research involving human subjects must have IRB approval—even non-medical public opinion research, like my surveys on Qatari public opinion. What does this mean? IRB-approved research is ethical research. The entire study protocol is approved by an independent board and reviewed periodically for compliance. It means that your private information will stay private and confidential. Your name will not be associated with your medical information. You can trust an IRB-approved study!
I signed up for the PPMI (and you can too!) at this link. The PPMI then gave me about 20 short health survey forms to fill out at any point over the next four weeks. (I finished them all in about 30 minutes, but it’s nice that they give you plenty of leeway time!) And after every completed survey, you get an encouraging pop-up box that says congratulations and thank you!
After these initial health forms, you are contacted again in about 90 days with another online series of health questionnaires to fill out. Basically, your health history, over time, helps to build that massive database that, as the PPMI states, “could change everything about how brain diseases like Parkinson’s are diagnosed, treated and, ultimately, prevented.”
Thank you, Michael J. Fox Foundation for Parkinson’s Research and the PPMI study, for making the world a better place!
Originally published on Jocelyn Sage Mitchell’s website.