NeuroTalk Support Groups - NIH Clinical Trial: Neurotropin

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - NIH Clinical Trial: Neurotropin (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/145753-nih-clinical-trial-neurotropin.html)

NIH Clinical Trial: Neurotropin

Is anyone here participating? I've just signed up and passed the preliminary screening. Now waiting for them to contact me (it could take up to a week). Of course, if we have a government shutdown, it will take longer as they won't be able to accept new patients.

It might be that the trials are already paid for.

I wouldn't worry yet.

The funding is there for the trial, but if the government shuts down, the workers themselves won't be there. It would only be for a few days (hopefully). I just hate being held up when I want an answer. :o

Quote:

Originally Posted by peppermintpatty (Post 748766)

Hi peppermint patty,

Have you heard anything from NIH regarding the clinical trial?

Teri

I actually did just a few hours ago. I'm in! So excited & can't wait to see how this works out. I am so very hopeful. :cool:

Quote:

Originally Posted by peppermintpatty (Post 751045)

I actually did just a few hours ago. I'm in! So excited & can't wait to see how this works out. I am so very hopeful. :cool:

Hi Peppermint patty,

Please share specifics. How long do you have to be there? Can you still take your current meds? Do they reimburse you for travel, etc?
Teri

Quote:

Originally Posted by ballerina (Post 751114)

Hi Peppermint patty,

Please share specifics. How long do you have to be there? Can you still take your current meds? Do they reimburse you for travel, etc?
Teri

Sorry I didn't respond sooner! Let's see....

Here's a quick blurb with some info:

Quote:

The admission criteria for this initial study have recently been amended to include patients who developed pain in one limb that has been diagnosed as having CRPS I or II for more than 2 weeks. Subjects are now being recruited for this outpatient, double blind, placebo-controlled cross-over study. The study requires 11-12 weeks with 3 or 4 short visits to the NIH Clinical Center. Eligible patients will be reimbursed for travel and other expenses, continue on their current medications as well as the experimental agents and will receive optimal medical care at no cost. The patient and/or the patient’s physician should contact the NIH at the address listed below. Upon completion of the study the patient’s physician will receive a report of the results of the study and recommendations for future treatment, as necessary.

For my first visit, I have to be there from 8a-2p. They will arrange flights and reimburse up to $20 for meals and $170/night for hotels. (Not sure how familiar you are with the DC area -- you'd be really pushed to try to eat for $20/day, but you could perhaps find a hotel for under $170/night, although taxes in the DC area can be pretty steep also.)

You can still take your current meds, I believe, except for narcotics, benzodiazepine, or Soma.

You'll take either the placebo or the drug for five weeks, then swap meds for a second five weeks.

That's as much as I have right now; awaiting more info.

Hope it helps. :)

Quote:

Originally Posted by peppermintpatty (Post 752287)

Sorry I didn't respond sooner! Let's see....

Here's a quick blurb with some info:

For my first visit, I have to be there from 8a-2p. They will arrange flights and reimburse up to $20 for meals and $170/night for hotels. (Not sure how familiar you are with the DC area -- you'd be really pushed to try to eat for $20/day, but you could perhaps find a hotel for under $170/night, although taxes in the DC area can be pretty steep also.)

You can still take your current meds, I believe, except for narcotics, benzodiazepine, or Soma.

You'll take either the placebo or the drug for five weeks, then swap meds for a second five weeks.

That's as much as I have right now; awaiting more info.

Hope it helps. :)

Hi Peppermintpatty,

How is the neurotropin study going? Are you getting any relief?

My daughter was in that study last summer for 10 weeks. For anyone considering it, you must have RSD in one limb/side only so that they can use the other side for comparison. They will do a lot of testing on you and they are very thorough. All of this is free to you so it is a wonderful opportunity for those with limited or no insurance.
The staff is very nice there as well. We were able to stay at the Marriott right down the street which took the per diem rate and included parking in it as well.

Liz

Quote:

Originally Posted by betsykk (Post 771433)

Hi liz,

Did your daughter get any pain relief from the neurotropin?

Teri