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Topic article today re:gene therapy Go to previous topic Go to next topic Go to higher level

By MarthaJ On 2012.04.12 17:22
Have you seen this? It's an article in the UK Mail Online about gene therapy injected into the brain: http://tinyurl.com/7qmjbgl

Looks very promising!

Martha

By karolinakitty On 2012.04.12 20:58
Yeah i just saw and read it...pretty interesting...I have a few parkie friends in the UK and they are excited about it...hoping they can get into the testing process.

By karolinakitty On 2012.04.12 21:30
One thing though....needle through my head???? ouch.....don't know if i myself would consider it...but it does look promising at least with the woman they highlighted

By parkinit On 2012.04.13 11:19
This is one we were considering - gene therapy test group. We opted for DBS, because we were told if you've been involved in gene therapy tests you cannot be considered for many other test groups. However, DBS patients can be.

Please, also note, that the effects of the gene therapy was short-lived: average after 3 months was 29% improvement, average after 6 months 4%. This is a common issue with gene therapy - you have to replenish the genes frequently to maintain the level of improvement initially felt. Also, they don't state this, but the fact that you are sticking a needle in the brain causes some extra activity as the neurons become excited by the invader.

This occurred with my spouse after we had DBS. We went from 1:45 between pills to 5 hours WITHOUT the devices being turned on. They call this the honeymoon period. For us, this occurred for several weeks after the surgery - and then they turned on the batteries, so it may have even been a benefit longer, but we will never know. :)

By lurkingforacure On 2012.04.13 23:00
parkinit, we were told very clearly by several neuros that if you have DBS you will NOT be eligible for any clinical trial. This is because a brain that has had surgery is considered "altered", go figure. Same is true for gene therapy.

We passed up a gene therapy trial in the US because of this, also serious doubts about the efficacy, which have proven to be correct, so glad we did not do it. I don't know how someone could tell you DBS will not preclude you from future trials, go to clinicaltrial.gov and see the exclusion list for the PD trials and most of them will list DBS or any brain surgery as an excluding event.

By karolinakitty On 2012.04.15 12:48
lurking...from what I read (and saw) I understood it was an injection, not invasive surgery...did I misunderstand...or do they consider it actual surgery because there was an alteration made to the gene..they are only injecting a virus....almost like a flu shot...you get injected mostly with a virus to prevent a virus.....

By LOHENGR1N On 2012.04.15 14:17
kk. From what I read in the link this is injected directly into the brain. So they must have to at least bore a hole through the skull in order to insert the needle into the brain to administer the shot. Sounds like invasive procedure when put into common language. Of course they don't like to use common language because it really sounds risky when they do they'd rather have the public view it like a shot in the arm instead. Take care, best of luck and hang in there.

By parkinit On 2012.04.18 20:27
Lurking -
Gene therapy is not reversible. DBS can be. Please read: under the heading, "Is there any treatment:"
http://www.ninds.nih.gov/disorders/deep_brain_stimulation/deep_brain_stimulation.htm

This is why we went with DBS. If something better comes along, you could still be considered a candidate for it. With gene therapy, there is no reversing.

By lurkingforacure On 2012.04.19 23:01
I think we're saying the same thing...my understanding is that you cannot participate in a clinical trial if you are considered to have an "altered brain", Alteration obviously would include gene therapy and DBS, even though DBS is reversible.

Sure, if you get DBS and something better comes along in the market, you can get that. But you will not be eligible to get that in a clinical trial, you will have to wait until it gets FDA approved and is available to everyone...and we all know how long that takes. :( You have to really weigh things when making decisions, there are so many things to consider.


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