[soccertese]

http://blogs.scientificamerican.com/...nsons-disease/

http://clinicaltrials.gov/ct2/show/NCT01621581

[indigogo]

I believe Perry Cohen is in this study? Does someone know for sure?

[soccertese]

Originally Posted by indigogo

I believe Perry Cohen is in this study? Does someone know for sure?

the first article describes him as the 1st patient, very unusual to mention patients by name in a trial imho.

[indigogo]

I should have looked at the article first!

Perry's a very special patient. A loooong time advocate; he started the Parkinson's Pipeline Project, and has been holding out and staving off other treatments (like DBS) that would make him ineligible for a future GDNF trial - if one became available. Fortunately for him, one did. He is literally banking his life on this opportunity.

All PD patients owe Perry a ton of gratitude for his activism and service on our behalf.

[Conductor71]

I signed on for this too...same rationale as Perry. I head to the NIH on August 5th for screening. They are pretty comprehensive includung the U Penn smell test, genetic workup, and a DATscan. From my viewpoint, even if I do not qualify for the trial, I will have the most advanced diagnostic tools out there to confirm my diagnosis. Not a big doubter, but I have some atypical things, so I really wanted to be sure before I went with any brain invasive procedure. The best part is that they do ot make us endure a drug washout! Given they pay for everything for me and a caregiver, this is almost a mini vacation.

Hopefully, I make the cut and can share what happens since there is no control group.


Laura

[olsen]

Laura, thank you for participating in the trial--and I send lots of hope and encouragement.

[Tupelo3]

Originally Posted by Conductor71

Hopefully, I make the cut and can share what happens since there is no control group.

Laura

Best of luck Laura. I hope you get in, and I hope it works!

[wxxu]

Originally Posted by Conductor71

I signed on for this too...same rationale as Perry. I head to the NIH on August 5th for screening. They are pretty comprehensive includung the U Penn smell test, genetic workup, and a DATscan. From my viewpoint, even if I do not qualify for the trial, I will have the most advanced diagnostic tools out there to confirm my diagnosis. Not a big doubter, but I have some atypical things, so I really wanted to be sure before I went with any brain invasive procedure. The best part is that they do ot make us endure a drug washout! Given they pay for everything for me and a caregiver, this is almost a mini vacation.

Hopefully, I make the cut and can share what happens since there is no control group.


Laura

Thank you for sharing Laura! This is a hope for all of us, cannot wait to hear good news from you...

Also there is another GDNF trial planned by MedGenesis for the Phase II and phase III -

Phase II Clinical Study
 6 patients successfully completed surgery and infusion in pilot study
 Main Phase II study with 36 additional patients due to start Q3 2013
 Full efficacy and safety data readout in 2015
The Phase II study is being conducted in Bristol, England, and is supported by significant direct funding to the site from Parkinson’s UK.

Phase III Clinical Study (with partner)
 Two multi center studies
 Approximately 180 patients per study
 Delivering 2018 marketing authorization

[wxxu]

The link -

https://www.michaeljfox.org/files/ac...enesis%201.pdf

[Bogusia]

Admire your courage Laura. All the best.