Girija - contacting researchers is a good idea. They usually provide a contact.l Linda - your questions/comments are on target. You should write a response to the article. Since you are known for your Pipeline affililiation, this might help when writing.

Pending the researchers' response, we can write as a forum group or as individuals.

Peg

Taking Girija's advice, I did write to Dr. Yilong Ma, the lead author on this study to ask why the delay in publishing the data. He very graciously replied to my email today
And I also spoke to Dr. David Eidelberg, the Director of the Feinstein Institute. He asked that this information be shared with other interested PWP.

The analysis of the long term data was actually not started until 2008.

I asked about the statement in the PR release that this experimental treatment was just “forgotten about.” They replied that the results of the two double-blind/placebo controlled trials “ were very disappointing and there was certainly a lot of doubt regarding the potential effectiveness of this therapy.’ The researchers were especially concerned about the “unexpected occurrences of side effects” (dyskinesias). “

“Due to the negative publicity generated from these initial reports, we did not aggressively pursue this project at the time.
Firstly we were hoping to include more patients for the follow-up. Secondly we were busy and actively engaged in many other funded studies on PD and related disorders. “

“Given the renewed interest in cell/gene-based treatment for PD, we
decided in 2008 to examine the long-term outcome of this valuable clinical/imaging dataset. Our goal was to report that this data is revealing to us and learn some lessons that are valuable for future trials of novel therapeutics.”

Dr. Eidelberg also stated that the technology needed to be able to analyze the complicated long term clinical and scanning data was not available when the follow-ups were being conducted.

I was glad to see a summary of their study on PD OnlineResearch tonight.
http://www.pdonlineresearch.org/news...inical-benefit

Hopefully there will further discussion on this subject and important lessons learned for current and future clinical trials involving cell replacement, gene therapy, growth factors, etc.
many thanks to Drs. Ma and Eidelberg for sharing this information with us.

THANK YOU for your detective work!

Peg