Clinical Trials

[MG Community Member]

75 clinical trials are an awful big number. If I may ask, how many were successful, i.e. if the drug or appliance or process went on to Phase 3 and eventually received FDA approval.

[MG Community Member]

Ι totally agree with u.75?Even if they are legit,where did the pt have the courage to go through all of them?

[MG Community Member]

I have participated in 5 or 6 clinical trails including levedopa effects on cognition, MRI scans and most significantly photobiomodulation.

The light therapy using a Symbyx helmet and hand held laser seems to have made a marked difference with my neurologist commenting on my improvement, so much so that a tremor is about the only apparent symptom. This trial is still ongoing although I have finished participating

[MG Community Member]

Hi, Vaktiree,

May I know how did you get the opportunity to participate in the Symbyx trial and do they still need some new participants because I would like to try their products?

Thanks.

Christine

[MG Community Member]

G’day Christine

As you may guess, I am Australian and that is where the trial was conducted. BTW my sensse of smell, long gone, appears to be returning!

Cheers

[MG Community Member]

Hello. Can we talk more about the light thereof you did? The equipment is available for purchase for $2500.

[MG Community Member]

As a researcher, I would recommend caution. 1) What is the quality of the study? is it worth your valuable time and will the study have impact. 2) people have died in clinical trials.

[MG Community Member]

How do you qualify for all of them?

I find so many won’t take me because of my stage (was diagnosed too long ago/not severe enough/taking this medication/not taking that medication…etc)

Also, don’t they all have wait times from your last trial? Once you’ve tried something experimental (Say, in my case, a drug trial that lasted three years) you can’t participate in anything else for 6 weeks/6 months/whatever.

So, depending on how many years you’ve had PD, you can only fit so many in!

[MG Community Member]

I’m back. 🙂

I consider a clinical trial any separate medical trial that can be as long as a few hours to months / years.

A very larger number of Clinical Trials are 100% non-invasive. Many trials in that group are observational only

I really cannot see how you can do harm to yourself with a non-invasive observational trial.

[MG Community Member]

Thnx for sharing. My husband’s neuro at Vanderbilt never referred him to any clinical trials, nor supported him in any of those efforts. Had he been supported by his neuro, he would have had access to medical tests & scans. Now, I have been relegated to searching for all resources myself, & it’s daunting!

[MG Community Member]

Go to clinicaltrials.gov.

You can narrow it down with search terms (your disease, observational or not, what rx interests you–like: stem cells/red light/antibodies/exercise…whatever… your location, your age, etc.) If you DON’T do that you’ll be searching through about a million trials.

Every dr. I’ve had has promised to find me trials, and not a single one has followed through.

There are also about a billion online surveys that want filling out too. I do my share of those, and I don’t count them as trials, though they can get annoying.

[MG Community Member]

I’m trying to reach the guy who posted about the light therapy. The equipment is available for purchase for $2500.

[MG Community Member]

I participated in Phase II of the Pro-Seek Trial by Sun Pharmaceutical. The drug was suppose to slow disease progression. I dropped out in the second phase of Phase II due to extreme fatigue, as did other participants. The trial was abruptly stopped about 6 months later because Sun was not seeing the results they hoped for. The research administrator said I my never know if I received the trial drug or placebo.