Have you taken part in a clinical trial?

[foxglove]

What was that like?

[JerryD]

Hi foxglove. I haven't been in a clinical trial. Not that I haven't been trying. Why are you asking ? Do you have something in mind ?

[hunterd]

I have taken part in 2 clinical trials. One was for fatigue, and the other was for cognitive abilities. They were both simply answering questions over certain time periods.

[Mamabug]

I participated in a KU research study. They use sensors and cameras, during two to three hours of "walking" and "standing" tests, to test for mobility and balance, swaying, etc. It consisted of the first time, during which they ruled out which participants were not mobile enough to continue in the study. It was followed by three follow-up, each 6 months apart and the results compared over time.

The researcher hopes to develop a product to market to neurologists so that they have an additional way (other than MRI's and clinical observations) to measure and track MS progression. I had hoped that, after the last follow-up, that they will give me some data on my progression during the two years of the study, but they weren't able to do that.

KU reimbursed me for my time and mileage. Kansas City is about a three-hour drive, one way. Since I was going anyways, for my 6-month appointments, the mileage reimbursement (which was around $200 per time, because of the distance) was just "gravy".

I value research. And, I'm grateful for new information that can be attained by clinical trials. But, I'd be less likely to be willing to participate in a drug trial, because of the risks. Unless I'd tried other meds and if a drug trial seemed to offer a hopeful alternative to what was already out there.

[bobtheisen]

I have been in 3 clinical drug studies, over the years. I have been at the same research place for all 3 studies. I already knew the research neuro and it has been a great experience.

I have done a second study with Ampyra, the "walking Pill". This study looked at speed of walking and balance. It was a 6 month study. I got the real Ampyra

I have done 2 studies with Copaxone. The first one was Copaxone with teriflunimide, now known as Aubagio The Teriflunomide was either placebo, 7 mg or 14 mg dose. I never found out what dose I was on but me and the neuro feel I was on the real stuff.

The other Copaxone study was with the 3 days a week 40 mg dosing. That study lasted 6 months when that dosing was approved by the FDA. By the luck of the draw, I got the 3 days a week Copaxone.

My drug study experience has been positive. There have been bumps on the road but nothing major.
In my situation, I was shown everything that was involved in the study at the screening. My initial screenings would take 2 /3 hours. The screening is very involved and through.

Wishing you the best, if you are wanting to get involved .

Take Care, Bob

[Laurendiana]

Hi foxglove,

I am actually currently in a clinical trial for a new drug. It is a 2.5 year study. I get access to all of the tests they do, and I am seen by my neurologist every 3 months. I personally find it comforting being more closely followed by my doctors.

Besides taking the medication, I don't need to do much. I have questionnaires I need to do, but they are simple. I've been in the trial since May, and it's definitely been a good experience for me!

Hope that helps!

Take care,

Lauren

[J-Bo]

Thanks for sharing that, Mamabug

I am always thinking when I visit the neuro that they do such imprecise testing, like testing how strong your arms and legs are by just feeling--so subjective, even from day to day, or clinician to clinician. Almost seems like a waste of time. So I was glad to hear that someone is trying to come up with measurement tools, even if they were different from what I mentioned. Come to think of it, a lot of that should be pretty low tech, like measuring strength and walking. I just don't get why, if they're going to the trouble to collect data points, they don't collect ones that are worthwhile, you know?

[JerryD]

Hey J-Bo, do you mean that tapping you knees with a rubber mallet and squeezing your hands and fingers seems to NOT BE 'objective' as a scientist should be ? lol That has been one of my observations about this MS journey since I began in 2009 ! One would think that there must be better testing modalities than that. Tapping and squeezing fingers have no gauges. How would you feel if thegas pump at the station had no meters ? I don't doubt that a specially trained neurologist can do a good exam, but COME ON, medicine is a science ! Treat it like one !

[J-Bo]

Zactly, Jerry. 👍 Like, they had the technology to measure stuff like that in 1920, didn't they? Just don't get it.

[stewart]

yes

I think pretty old thread - but anyway - yes on 2 trials. One for tecfidera - similar to original one I think just expanded to look at more. Second trial more interesting - they are looking at the gray stuff in the brain - not at lesions. If anyone interested in that I'll let you know more on what they are doing as I can.

[Mamabug]

I am always thinking when I visit the neuro that they do such imprecise testing, like testing how strong your arms and legs are by just feeling--so subjective, even from day to day, or clinician to clinician. Almost seems like a waste of time. So I was glad to hear that someone is trying to come up with measurement tools, even if they were different from what I mentioned. Come to think of it, a lot of that should be pretty low tech, like measuring strength and walking. I just don't get why, if they're going to the trouble to collect data points, they don't collect ones that are worthwhile, you know?

Yeah; I hope they use the data to develop a useful measurement tool.

[Jules A]

I've been in three so far. The first was a blood depository for genetics. The second two included blood and also walking/processing speeds which are followed over a period of years.

Don't mock the rubber hammer test as it is actually graded based on how hyper-reflexive or not we happen to be. Much of the basic neuro testing is positive or negative, normal vs abnormal, so not much value in specifics cause if you have it, you have it.

Unfortunately with MS there isn't so much they can do, even if they hooked us up to some fancy tracking device, other than offer a different medication therapy if things are hitting the crapper so imvho monitoring every little nuance isn't necessary.