Welcome to the scientific website for the study. This is the central hub for the research community to access the PPMI data and specimens you are contributing to the study. This site serves as crucial infrastructure to support scientific collaboration through PPMI.
Staying in the Loop on Developments in PPMI
We are hosting the enrolled participant page on this website so that you have a firsthand view of all that is happening on PPMI and how the scientific community is using the output of your efforts to advance Parkinson’s research. The best way for you to stay apprised of all that is going on in the study is for you to sign up for email updates to receive an email synopsis every other week of the stories we post to our blog. Click here to read the latest blog posts.
Roadmap to Other Information on This Site
Other important study documents and information that are helpful for researchers to understand the study and make use of the information coming out of it is posted here.
- Study Design. Access to the study protocol (the scientific plan for the study and its design). This page also provides a view into the standardization required of all PPMI sites. The value of the PPMI repository is dependent on the ability of all sites to collect, process and store samples in a uniform manner. The manuals and SOPs included here provide sites and other researchers with insight into these policies and procedures. Finally, the Data and Specimen Use Agreements, and the Publications Policy are posted here—these documents stipulate all of the results sharing that is so unique to PPMI.
- Download Data. This is where researchers come to actually download data from the tests and assessments you complete in PPMI. Remember, all information is blinded, so no one can tie a specific result to you as a participant. We are often asked by participants if they can access the database. The kind of data included in the database isn’t terribly useful, since the data here is raw data and, without sophisticated analysis, doesn’t tell you much.
- Request Specimens. Similar to the data, this is where researchers come to request specimens from PPMI. Because the specimens are in limited supply, all applications are reviewed by a committee before samples are granted.
- Usage Stats. This page shows where in the world PPMI researchers are downloading PPMI Data. It also provides the number of specimen requests that have come in and a sense of what sectors people who download the data are coming from, again emphasizing the unique, cross-sector nature of PPMI.
- For Prospective Participants. Since you are on this page, you already understand the importance of a study like PPMI. That said, the study continues to actively recruit male controls and newly diagnosed PD patients. If you know someone who is newly diagnosed or have a friend who might like to participate as a control, share the PPMI recruitment site with them: www.michaeljfox.org/ppmi.
We invite you to browse around the site to learn more about the scientific detail of PPMI. If you have questions about anything posted here, contact your study site to learn more. We look forward to sharing more news of our progress with you as the study advances toward our shared goal of identifying a Parkinson’s biomarker.