Parkinson's Disease Tulip


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Old 02-24-2019, 11:53 AM #1
johnt johnt is offline
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Default GDNF: television documentary about clinical trial

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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Old 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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Old 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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Old 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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Old 02-28-2019, 11:03 PM #5
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Quote:
Originally Posted by johnt View Post
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
Does anyone know if this will be available for viewing in the U.S. I tried to find it this evening but didn’t have any luck. Also tried online with BBC Iplayer, but you need a TV license. I think it’s great that BBC is airing the documentary but it sucks that they aren’t making it openly available.
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Old 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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Old 03-08-2019, 07:36 PM #7
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Default GDNF videos

Part 1:
The Parkinson Drug Trial: A Miracle Cure? Part 1 - YouTube

Part 2:
The Parkinson Drug Trial A Miracle Cure, Part 2 - YouTube
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Old 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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Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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Old 03-10-2019, 11:00 AM #9
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Default Monkeys in the Middle

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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Old 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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