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

[QUOTE=Conductor71;951954]

i'm certainly not criticizing speech analysis nor speech pathologists. nor science.
i used a speech pathologist for my son, loved him. i've never used one but might need to get some speech training as my pd progresses.

i'm just incredulous at the attention this guy got by speaking at TED yet he' was virtually unknown before TED. and how the news media just gushed all over him without questioning one thing he said or sought other opinions.

Little's latest (2013) paper:

"Objective: To assess the clinical value of online, self-reported PD symptom data recorded by users of the
health-focused Internet social research platform PatientsLikeMe (PLM), in which patients quantify their
symptoms on a regular basis on a subset of the Unified Parkinson‟s Disease Ratings Scale (UPDRS)."

Data
6074 PD patients on PLM
100 included in this study, qualification to be included 15 UPDRS scores.

Results
"Validation demonstrated the high-frequency self-reported data is consistent with a low-frequency clinical data
set in common use in clinical PD studies. The distributions of PLM to PD-DOC “off” scores are essentially the
same".

Obviously it can be perfected, but as I see it, the technology is in place. The question now is:
Is there the political will to run simple clinical trials in this way?

Reference

[1] M.A. Little, P. Wicks, T.E. Vaughan, A. Pentland (2013)
Quantifying short term dynamics of Parkinson’s disease using self-reported symptom data from an Internet social network
Journal of Medical Internet Research, 2013;15(1):e20, doi:10.2196/jmir.2112
http://www.maxlittle.net/publication..._pd_web_v2.pdf

John

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

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