Parkinson's Disease Tulip


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Old 08-26-2013, 05:14 PM #1
Tupelo3 Tupelo3 is offline
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Default Researchers take step toward predicting Parkinson's - Initial Results from PPMI

A study published today takes the first major steps toward predicting who will get Parkinson's disease and what the course of their progression will be.

Compared to healthy adults, the study found that people with early Parkinson's had lower levels of amyloid beta, tau and alpha synuclein in their spinal fluid. In addition, those with lower concentrations of tau and alpha synuclein had greater motor dysfunction. And early Parkinson's patients with low levels of amyloid beta and tau were more likely to be classified as having the postural instability-gait disturbance- dominant (PIGD) motor type of disease, where falling, freezing, and walking difficulty are common.


I wasn't able to get a copy of the actual study yet, that should be available at JAMA Neurology in a day or two.
I'm happy to say that my wife (as a control) and I are participants in the on going PPMI research. This study is the first significant finding from the Parkinson's Progression Markers Initiative.

http://www.usatoday.com/story/news/n...medium=twitter

http://medicalxpress.com/news/2013-0...iagnostic.html
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Old 08-26-2013, 05:20 PM #2
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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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Old 08-26-2013, 05:54 PM #3
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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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Old 08-26-2013, 10:59 PM #4
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Coincidentally, my husband has his next spinal tap tomorrow for PPMI.
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Old 08-27-2013, 01:15 AM #5
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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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Old 08-27-2013, 07:25 AM #6
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Quote:
Originally Posted by johnt View Post
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
John, have you received access to the data? I didn't think the access was as easy as you're implying. I have a pending application with the PPMI Data Sharing and Publications Committee, but have not yet received my access approval.

Thanks,

Gary
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Old 08-27-2013, 07:56 AM #7
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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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Old 08-27-2013, 08:15 AM #8
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Quote:
Originally Posted by Tupelo3 View Post
John, have you received access to the data? I didn't think the access was as easy as you're implying. I have a pending application with the PPMI Data Sharing and Publications Committee, but have not yet received my access approval.

Thanks,

Gary
same here My application is pending too.
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Old 08-27-2013, 11:14 AM #9
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Quote:
Originally Posted by johnt View Post
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.

John
John, coincidentally, I just received access approval.
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