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What Happens to My Data in PPMI ?
PPMI has put multiple measures in place to safeguard the information you contribute . All identifiable information ( including your name and contact information ) is kept in a secure database . Every measure is taken to protect the privacy of this information , including our use of the most rigorous security protocols available , regular security updates and other technological and administrative processes .
The scientific data you contribute to PPMI is de-identified ( your name and identifying information are removed ) and shared with qualified researchers for use in studies to advance understanding of PD . Scientists who want to study your data must apply to PPMI for access and sign a form that says they will protect your data privacy . Your information will not be sold and will never be shared outside the research community .
PPMI takes every measure to protect your privacy . Still , as with all online activity , it is important for participants to know that it is never possible to fully guarantee against breaches in security . PPMI ’ s commitment is to take significant measures to reduce this risk as much as possible . And we hope that in spite of the risks , you will remain motivated to participate and contribute valuable data to brain research over time .
PPMI Data Is ( Already ) an Unparalleled Resource for the Field
PPMI data is downloaded more than 2,000 times per day by researchers around the world . Using a simple online system , they can access study data and request samples for use in complementary research . Analysis of PPMI data and samples has led to significant findings on , for example , brain imaging of dopamine loss in early PD and genetic variants associated with Parkinson ’ s ( see page 13 ). And PPMI ’ s rigorous standards for gathering , storing and analyzing data and biosamples have been adopted by other studies , allowing scientists to directly compare data and learn from more people .