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02-24-2019, 11:53 AM | #1 | ||
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For those in the UK, on BBC2 this Thursday, 28th February, at 2100, and next Thursday at the same time, there is a documentary on the clinical trial for the Parkinson's drug GDNF.
This drug has had an interesting history: the first trial was a success; the second trial was halted early as a failure, even though many of the participants thought that the drug was giving them a benefit. The third trial was completed last year. We await the latest results. I'm not too pleased that something as important as this should be subject to the television schedules. 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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02-24-2019, 10:54 PM | #2 | ||
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The full results of the GDNF trial are due to be published on 27 February 2019.
Clinical trial of GDNF | Parkinson's UK |
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02-27-2019, 07:10 PM | #3 | ||
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A paper is now available:
Extended Treatment with Glial Cell Line-Derived Neurotrophic Factor in Parkinson’s Disease - IOS Press |
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02-28-2019, 08:31 PM | #4 | ||
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An SoPD blog post from Simon is now also available.
The Bristol GDNF results | The Science of Parkinson's |
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02-28-2019, 11:03 PM | #5 | ||
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Quote:
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"Thanks for this!" says: | RooJr (03-07-2019) |
03-08-2019, 06:43 AM | #6 | ||
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Do a search on youtube for"The Parkinson Drug Trial: A Miracle Cure? Part 1" and you will find episode 1 of the documentary. Episode 2 only aired on BBC 2 last night and is not available on youtube yet.
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03-08-2019, 07:36 PM | #7 | ||
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"Thanks for this!" says: | johnt (03-08-2019) |
03-08-2019, 10:13 PM | #8 | ||
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The most striking thing about the documentary for me was how brave the participants were. Thank you.
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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03-10-2019, 11:00 AM | #9 | |||
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The second trials for GDNF were stopped by Amgen after the overview of the GDNF trials was given to Roger Pearlmutter, an executive at Amgen, who announced that there were not enough surgical theaters to place the catheters and the company could not make enough money with the current methods of administration.
Monkeys in the Middle – A Book | Julie's Attic
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In the last analysis, we see only what we are ready to see, what we have been taught to see. We eliminate and ignore everything that is not a part of our prejudices. ~ Jean-Martin Charcot The future is already here — it's just not very evenly distributed. William Gibson |
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"Thanks for this!" says: | jeffreyn (03-11-2019) |
03-16-2019, 12:47 PM | #10 | |||
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I thought this may interest,,
I was a participant I wanted to prove gdnf works I was always aware that this was not a viable way of dispensing it large scale on the day-to-day basis but I hoped that by proving the science of the protein it would lead to a cure with further investment and development . It was very demanding and took over 2 1/2 years of my life but if I have to make the same decision again tomorrow I would choose to be involved March 2015/ I went to theatre at 8am biggest fear wondering whether I would wake up that was a risk I was prepared to take.I wanted to improve my life.10 hours later I was awake in recovery. Looking like a battered pixie.A pointed bandage covered my wound and port. My pixie hat was a crepe bandage. A black eye and half an eyebrow. Bruises no doubt from being moved around in theater and in and out of scanners.The science for me didn’t matter I wanted a slice of the cake GDNF. Infusions commenced and every 8th week medication was withdrawn,I had the humbling experience of having to be cared for and needed to use a wheelchair.I felt no benefit whatsoever from any of the infusions. Next phase I get GDNF and 3 infusions later there are changes, only one of which I mention here. I could take myself from home to Bristol no carer 500 mile round trip, I got myself to the Hospital no wheelchair. GDNF worked for me.Was it worth it yes it was,I learnt much about my Pd and I have hope for the future development of GDNF |
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