Parkinson's Disease Tulip


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Old 01-29-2013, 12:31 AM #1
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Default My error

Girija,

My post on the AAV is a hot mess. My apologies. I partially included some of my notes which had lots of assumption built in and mixed up research groups. I need to start proofing evrything. There is so much misinformation out there on PD already, and I just added to it. Ugh.

Anyway, the connections are not as clear as I wishfully made them out to be in my notes though there are some very close ties. It turns out that Ceregene has its own patent on the AAV being used and they are working with Genzyme. Genzyme in turn holds license to the convection AAV patent holder at UCSF (Krys Bankeweicz), but are studying delivery of an enzyme AADC that helps produce dopamine. To further muddy the waters Ceregene's founders and owners comprise two scientists from UCal SanFran. Andy Grove funds research at both UCSF and MJFF with a strong interest in neurotrophics. In two articles, it appeared that all of researchers I just mentioned answered directly to Andy Grove, so it seems this is not forté.

As for the convection AAV; my assumption was that NIH must be licensing as I could only find UCSF as being sole patent holder on the convection enhancement, but these were my notes. I intended to have a qualifier in the post. Now it is too late to edit.

So sorry about this; I am embarrassed. Though in researching this anew to be sure I got it right this time, I ran across the following updates see the last entry on GDNF...is the NIH study their Phase I?

http://neurosurgery.ucsf.edu/bankiewicz/parkinsons.html

Laura

Last edited by Conductor71; 01-29-2013 at 02:03 AM.
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Old 01-29-2013, 03:57 PM #2
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Laura,
Thanks.
No worries, I just got excited thinking that there is some sort of coordination among researchers! Thanks for all the info.
Girija

Quote:
Originally Posted by Conductor71 View Post
Girija,

My post on the AAV is a hot mess. My apologies. I partially included some of my notes which had lots of assumption built in and mixed up research groups. I need to start proofing evrything. There is so much misinformation out there on PD already, and I just added to it. Ugh.

Anyway, the connections are not as clear as I wishfully made them out to be in my notes though there are some very close ties. It turns out that Ceregene has its own patent on the AAV being used and they are working with Genzyme. Genzyme in turn holds license to the convection AAV patent holder at UCSF (Krys Bankeweicz), but are studying delivery of an enzyme AADC that helps produce dopamine. To further muddy the waters Ceregene's founders and owners comprise two scientists from UCal SanFran. Andy Grove funds research at both UCSF and MJFF with a strong interest in neurotrophics. In two articles, it appeared that all of researchers I just mentioned answered directly to Andy Grove, so it seems this is not forté.

As for the convection AAV; my assumption was that NIH must be licensing as I could only find UCSF as being sole patent holder on the convection enhancement, but these were my notes. I intended to have a qualifier in the post. Now it is too late to edit.

So sorry about this; I am embarrassed. Though in researching this anew to be sure I got it right this time, I ran across the following updates see the last entry on GDNF...is the NIH study their Phase I?

http://neurosurgery.ucsf.edu/bankiewicz/parkinsons.html

Laura
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Old 01-29-2013, 04:12 PM #3
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Quote:
Originally Posted by girija View Post
Laura,
Thanks.
No worries, I just got excited thinking that there is some sort of coordination among researchers! Thanks for all the info.
Girija
Girija,

There very well may be but would not know for sure without contacting them. Do you have any guess as to what the hold up may be? Do you why convection enhanced is better?

Thanks!

Laura
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Old 02-26-2014, 08:54 AM #4
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Wider data collection.

"PatientsLikeMe and the nonprofit research organization Sage Bionetworks announced today the launch of a new crowd sourced study to develop voice analysis tools that both researchers and people with Parkinson’s disease (PD) can use to track PD disease progression

In collaboration with TED Fellow Dr. Max Little, the Patient Voice Analysis (PVA) project will for the first time combine data from two sources: phone-based voice recordings that Dr. Little’s software collects and analyzes to detect markers of PD; and information reported by patients using PatientsLikeMe’s Parkinson’s Disease Rating Scale (PDRS), a tool that documents patients’ answers to questions that measure treatment effectiveness and disease progression."

http://www.epda.eu.com/en/news/02-05-patientslikeme/

I like this news:

DATA + ANALYSIS = INTERVENTION IDEAS

I wish the collaboration included mention of trials of minor interventions, such as circumin.

TRIALS + ANALYSIS = THERAPIES

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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