Bristol GDNF trial

[jeeves19]

I'm sure that I won't be the only 'Brit' writing about this but here in the UK we've had a two part documentary on the BBC that documented the GDNF trail that involved about 40 odd Parkinsons individuals. Hopefully it'll appear on YouTube or if you can access BBC iPlayer then go for it. A moving and frustrating programme. Many of the subjects improved their PDRS score by 50/60% over an 18 month period and to see the difference in most of them was remarkable. Some had fewer improvements but considering that so many did well strikes me as bizarre that Pfizer et al have dropped it. My thoughts were that it helped greatly with those who were under the 10 year mark but less so those way above this (such as dear Tom Isaacs bless him). It definitely works and to see so many success stories calls into question the nature of scientific measurement against 'common sense' at times!

[Eliza-Jane]

G'day Adam. aaaaaah . . . how frustrating! If many improved why aren't they going further? Is it because more PWPs can't benefit than those who can? Thereby why spend the money on manufacturing it if only 120,000 benefit when 1,120,000 can't? (Those figures were plucked from the air above my brain so enough said). Can we start a movement? Can we collectively rise up and be heard? This is our health, our lives and our future that they are dismissing.

[jeeves19 in reply to Eliza-Jane]

Unsure Jan. They pulled out in 2003 because they placed the GNDF source in patients guts (like a couple of baked bean tins) and these leaked. The new trial kept the source in clinic and was much safer.

[WinnieThePoo]

I hope more people watch the program before commenting on threads about it. An excellent program. Research which needs pushing forward

[jeeves19]

Some good person put it on YT gang so here's the link:

youtube.com/watch?v=c2jEk3R...(Not working as expected?)

[Juliegrace in reply to jeeves19]

Thanks for posting this. Has the second part aired?

[Despe in reply to jeeves19]

Looks painful and very invasive. I don't believe it's meant for older patients but again, the majority of PwP are over 60! YO patients will definitely sustain the procedure. It scares the h. . .l out of me just looking at it.

[jeeves19]

Yes last night. Hopefully it’ll appear on YT soon. The second is most interesting as it considers the results and is often quite an emotional experience.

[Trixiedee in reply to jeeves19]

I cried for Tom Isaacs 😭

[jeeves19]

Yes I felt the same😕

[Farooqji]

Part 2

youtu.be/TOyIdlzNKnI(Not working as expected?)

[Juliegrace in reply to Farooqji]

Thank you.

[JANVAN in reply to Farooqji]

Thank you iqbaliqbal !

That’s the nice thing of Internet : things can democratily spread very easy for many people.

Simon hat also posted interesting (and realistic) about it....

[Beanie57]

As others have said It was a very interesting program with very mixed emotions -RIP Tom. Wondering if there was anyone on this forum who was involved in the trial?

[Judyrsmith]

Thank you. Did they use a program like BIG? I’ll try to see it

[beech]

I cried during Part 2 when the doctor presenting the findings to the gathered trial scientists etc said it had failed - they were all so shocked, and so was I having followed it. That the trial’s criteria and parameters seemed so narrow and short term to warrant stopping the trial and withdrawal of development funding despite some initial successes which were stopped before the full outcome could be measured seemed to me to be shortsighted.

Ah well, back to the drawing board.

RIP Tom, what a wonderful man, and his incredible wife. As were all participants in the trial.

[Ballerina335]

I watched both episodes and felt gutted for all the brave people who underwent the trial. There were real improvements in people.People looked improved and felt improved. Heartless drug company. I was struck by Tom's bravery,hope and humour.❤