There are hundreds of research projects past and present, but what happens to all these results ? Who actually looks at them? Have any of them helped to improved drugs or treatments. I haven't seen much happen in the last ten years with regards to new drugs except to extend the release time of some. Perhaps someone could shed some light on it for me.
Hi Roberto,
That's a very interesting question, thanks for posting it. We have passed it on to the Research Team, who will hopefully be able to give you some insight. In the meantime, if you're interested, you can have a look at our current research projects section here: http://www.parkinsons.org.uk/content/current-research-projects to see what's happening at the moment.
Best wishes,
Mara
Moderation Team
thanks, i've looked at some, that's what prompted me to ask this question. What happens to all the data? Who actually looks at it and has it been useful? I am sometimes sceptical of research and it's benefits . I mean are some of the things they see wrong in pwp a result of having pd or a cause of pd. If you sprain your ankle it swells up but your ankle swelling up doesn't cause it to be sprained. If you get my meaning.
I have also watch the video and although it recognises what needs to be done it did not give any examples of where the research results are being used in any new treatments. So at the moment it looks like all fur coat and no K******s to me. Having said that, I am eternally grateful for the hard work these people put into this, but we need some meat on the bone soon.
Hi Roberto
Thanks for raising these questions.
The first thing to say is that we share your frustration about the slow pace of the development of new and better treatments for Parkinson's. That's why we are changing the way we do research to address some of the specific barriers that are currently slowing our progress.
You can read more (and watch videos) about our new approach and the specific initiatives we're bringing in here:
www.parkinsons.org.uk/content/about-our-research
Every medical intervention available today for people with Parkinson's - from medications to deep brain stimulation, physiotherapy to Parkinson's nurses - is a result of research, much of which has been supported by Parkinson's UK.
We are just working on a new page for the website highlighting some of these important contributions which we hope will be available soon.
We keep careful track of every penny we invest in research and provide reports for every project we fund on the website:
www.parkinsons.org.uk/researchresults
And one project we are particularly excited about which will produce results next year is our groundbreaking trial of GDNF - a potential new treatment for Parkinson's which is currently being tested in people with Parkinson's. You can read more about the current trial here:
www.parkinsons.org.uk/gdnf
I hope this reply goes some way to addressing your questions. If you would like to keep up to date with developments in Parkinson's research on an ongoing basis - and find out about opportunities to get involved - you could join our Research Support Network:
www.parkinsons.org.uk/rsn
All best wishes
Claire (in the Parkinson's UK research team)
Thanks for the reply claire, but it doesn't really answer my questions at all. I am sure you do watch the pennies but I asked "what happens to all the results, who looks at them and have they helped to develop new treatments" There has been a heck of a lot of research projects with little if any progress in the last 10 years. I am sure the researchers done a good job and probably gained good marks for their work but has it helped us?
You mention GDNF, this is not new , it is the delivery methods that are being tested as well as the efficacy. It is well known that people who were on it previously benefited from it until it was mysteriously halted. that is a good example of the big pharmas probably twisting peoples arms. This should be speeded up but I doubt if that will happen.
roberto
The GDNF trial, as you rightly say, is as much a trial of the delivery system and timing of infusions as it is of the GDNF itself.
The announcement that Pfizer have decided to become involved and the PDUK announcement on 16/9/15 indicates the potential. I am particularly interested in this development for the 36 participants in the double blind trial phase. This trial's results are due towards the end of 2016/early 2017. Naturally there will be limited further information while the trial is ongoing. I am certain the results once available will get a lot of attention.
kendo
Yes , it is interesting. I was invited to the selection interview but i had already enrolled on the exenatide trial which i have nearly completed. I can't work that one out with Pfizer, they must be able to make it more expensive else they wouldn't be bothered. Time will tell.
Exenatide trials funded by The Michael J Fox Foundation.....no drug companies interested as no real money to be made from repositioning drugs.
One of the very few organisations who can't be bribed.
We have much to thank them for.
I do hope your trial brings you improvement and the drug into our lives.
GG
So do i, but i have no idea if i received the drug or a placebo. I won't know until the last patient has finished the trial.
you will have no idea at all until trials finish, all so gdnf was shelved because they could not deliver the meds in exact part of brain , now there is this new delivery system there is hope !
I haven't seen that as a reason, but it does make sense although I felt really sorry for those who were improving with it only to have it snatched away without a reason explained to them.
I read that it coincided with some abnormalities found in the brains of primates that had been given much higher doses of GDNF. In a society that feeds on lawsuits, any inkling that there could be dangers in research, led to.....
AnyWho Gus is right the Trial has to end before publication of whether the use of a Convection Enhanced Delivery system (not new in itself) with better, targeted delivery of smaller volumes of GDNF, on a periodic rather than continuous basis, has improved the odds in favour of ongoing treatment using GDNF.
I have the CED in my head, so naturally, I'd rather the results led to a long term treatment in further phases. However, I have to say the double blind placebo process is essential. Even in the extension phase where all get the GDNF, we will not be told whether our first phase was GDNF or placebo until publication of the results.
Hi Roberto,
In case you have not come across this campaign, google "All Trials who are fighting for all trials results to be reported publicly within twelve months.of the results being in.
hi kendo
i thought if the gdnf treatment works for you, & when treatment ends & if the treatmeant is found to be working for you, then you could have choice to stay on gdnf !
Gus
A bit more complicated than that.
Initial 40 week 10 infusion double blind trial of either GDNF or placebo.
Provided no adverse events related to infusions. An extension of another 40 week 10 infusions of GDNF
Provided results are positive it is anticipated a larger trial will be initiated and the flow of GDNF will continue.
The ongoing supply will depend on this and future Trial results.
so when does the first phase finish?
I believe it was around the middle of this year that they announced they had recruited the last of the 36 for the double blind trial. That indicates early to mid 2016 before all have finished the 50:50 placebo or GDNF phase.
Please note I can't be specific about dates, even if I knew them. We're asked not to discuss where we're at in detail so we don't make any misleading assumptions based on seeing each other on a good or bad day for symptoms.
Thanks kendo hope it all goes well
hi roberto can i ask if you do not mind,
how you have been and got on on the exenatide trial i am in the last three months on this trial, will you do another and how is your PD generally?
kind regards bb ( karen )