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08-26-2013, 05:20 PM
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As a side note, the PPMI is a landmark observational clinical study to comprehensively evaluate cohorts of significant interest using advanced imaging, biologic sampling and clinical and behavioral assessments to identify biomarkers of Parkinson’s disease progression.
PPMI is taking place at clinical sites in the United States, Europe, and Australia. Data and samples acquired from study participants will enable the development of a comprehensive Parkinson’s database and biorepository, which is currently available to the scientific community to conduct field-changing research. The data base is OPEN to all researchers. There have been over 78,000 downloads of the data to date. We owe a thanks to the The Michael J. Fox Foundation for sponsoring and supporting this study. |
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| "Thanks for this!" says: | Bogusia (08-28-2013), indigogo (08-26-2013), johnt (08-27-2013), lab rat (08-27-2013), soccertese (08-26-2013) |
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08-26-2013, 05:54 PM
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They are even following a cohort of people who made it into the study, then had to withdraw when testing (including DATSCAN) showed they did not have PD.
Tupelo - that's so cool you and your wife were able to participate! I would have loved to, but at 14 years, of course was too advanced. MJFF has a PPMI Patient Committee to advise them on recruitment and retention.
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Carey “Cautious, careful people, always casting about to preserve their reputation and social standing, never can bring about a reform. Those who are really in earnest must be willing to be anything or nothing in the world’s estimation, and publicly and privately, in season and out, avow their sympathy with despised and persecuted ideas and their advocates, and bear the consequences.” — Susan B. Anthony |
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| "Thanks for this!" says: | Tupelo3 (08-27-2013) |
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08-26-2013, 10:59 PM
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Coincidentally, my husband has his next spinal tap tomorrow for PPMI.
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| "Thanks for this!" says: | indigogo (08-27-2013), soccertese (08-27-2013) |
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08-27-2013, 01:15 AM
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Senior Member
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The other nice thing about this is that the data is open to everyone.
GO DATA-MINE. This is not just something that other people do. If you can work a spread sheet, go dig. John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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08-27-2013, 07:25 AM
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Quote:
Thanks, Gary |
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| "Thanks for this!" says: | indigogo (08-27-2013) |
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08-27-2013, 07:56 AM
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Senior Member
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Gary,
I downloaded the data last year. I can't remember how long it took to get access, but I was pleased how quick it was. I assumed that if I could get access to the data, everyone could. Perhaps someone from MJFF could let us know what the present policy is. Great to hear that we're thinking along the same lines. John
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Born 1955. Diagnosed PD 2005. Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg |
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| "Thanks for this!" says: | indigogo (08-27-2013) |
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08-27-2013, 11:14 AM
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Quote:
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| "Thanks for this!" says: | indigogo (08-27-2013) |
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08-27-2013, 08:15 AM
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Quote:
girija |
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| "Thanks for this!" says: | indigogo (08-27-2013) |
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