Trial GZ/SAR402671

[Theyakin]

Anyone have any views on this trial GZ/SAR402671

dat scan and spinal tap worries me.

I can get on the trial but unsure ,

Thanks

[park_bear]

Trial here:

clinicaltrials.gov/ct2/show...

Background:

michaeljfox.org/news/parkin...

For those who get excited about drugs that have not been tested in the clinic yet: This trial will have taken 6 years just to complete phase 2. Figure least several more years for phase 3.

Lumbar puncture adverse effects:

google.com/search?q=Lumbar+...

"When spinal fluid is removed during an LP, the risks include headache from a persistent spinal fluid leak, brain herniation, bleeding, and infection. Each of these complications are uncommon with the exception of headache, which can appear from hours to up to a day after a lumbar puncture."

[jeffreyn]

Simon gave a brief update on this trial in an April 2019 SoPD blog post.

Just search the webpage (CTRL-F) for "Genzyme".

scienceofparkinsons.com/201...

[MissRita]

Hi, I don’t know anything about the trial but when my doctor wanted me to get a DAT scan 2 1/2 years ago I refused because of my thyroid issues that I have. I have yet to have one as I think the iodine/iodide would be damaging to my system. Where can I find the trial?

[Theyakin in reply to MissRita]

clinicaltrials.gov/ct2/show...

[sharoncrayn]

What medical center, PD Center of excellence, or genetics clinic informed you that you were a carrier of the GBA gene mutation (GBA1 at extreme risk for PD)? Less than 10% of the PD population have this mutated gene. Is it a variant of this gene?

Do you have Lewy body disorder? Gaucher's disease? A relative with Gaucher?

Age < 50?

s

[Theyakin]

I had a DNA test. I was Told I had the Gba gene but not gauchers due to having only one the genes if that makes sense

[Juliegrace]

I don't have an opinion on this trial but I did participate in a trial that required lumbar punctures (spinal tap). I had several over a period of five years without any adverse events. Having confidence in the doctor performing the procedure is key.