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John, Volunteer Mentor
@johnbishop

Posts: 2993
Joined: Mar 22, 2016

Clinical Trials for Neuropathy

Posted by @johnbishop, Aug 8, 2017

Has anyone participated in a clinical trial for neuropathy? The Foundation for Peripheral Neuropathy (http://www.foundationforpn.org/) has a search program on it’s website that allows you to match a clinical trial to your needs by asking a few questions and finding a match. Here is the page on their website:

https://www.foundationforpn.org/research/clinical-trials

If you know of other clinical trials that you can recommend, let us know about them.

John

Liked by Chris Trout

REPLY

Thanks @john Bishop

If you live in and around the Minneapolis – St. Paul area you might want to consider volunteering for the nerve testing study at the William R. Kennedy Lab of the University of Minnesota – http://kennedylab.med.umn.edu/volunteer-nerve-testing-study. I believe he is working on developing an inexpensive test that can be done by your primary care doctor to test for peripheral neuropathy.

I may be interested. It depends on what the treatment involves. I will check it out. Thank you, John. Have you ever done any?

@darlia

I may be interested. It depends on what the treatment involves. I will check it out. Thank you, John. Have you ever done any?

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I’ve never done any neuropathy clinical trials but I have done 3 different heart studies at Mayo Clinic Rochester. The studies were for high blood pressure and done through St. Mary’s Hospital in Rochester. I actually benefited from the 3rd study. They changed my blood pressure meds because they determined I had a specific type of hypertension.

If you live in and around the Minneapolis – St. Paul area or within driving distance, the Minnesota Neuropathy Association (http://neuropathy-mn.org/) is having there next monthly meeting on Thursday, August 31, 2017 at 1:00 PM. It looks to be an interesting meeting.

Dr Allen: Neuropathy updates from the University of Minnesota: Active and future clinical trials

DR ALLEN, a neuromuscular specialist and clinical investigator, will discuss clinical trials at UMN that are currently enrolling and those that are expected over the next year. Included will be trials relevant to inflammatory neuropathies, diabetes, hereditary neuropathies, and others. The presentation will be followed by a question and answer discussion, open to any question of neuropathy not limited to clinical trials.

Meeting location:
St. Michael’s Lutheran Church
9201 Normandale Boulevard,
Bloomington, MN 55437
Directions: http://minnesotaneuropathyassociation.org/wp-content/uploads/Directions-to-St-Michaels.pdf

Meeting Flyer (PDF): http://neuropathy-mn.org/wp-content/uploads/MNA-flyer-8-17.pdf

John

I live in the state of Missouri. I know that KC, St. Luke’s Hospital specifically conducts clinical trials in Neuropathy. My thoughts about being involved. Depends on your situation. Personally I would be willing to be involved if the treatment involved medical cannabis because it’s natural. At this time though the state of Missouri isn’t allowing medical cannabis YET.
WHAT thoughts or info do you all have?
Darlia

@darlia

I live in the state of Missouri. I know that KC, St. Luke’s Hospital specifically conducts clinical trials in Neuropathy. My thoughts about being involved. Depends on your situation. Personally I would be willing to be involved if the treatment involved medical cannabis because it’s natural. At this time though the state of Missouri isn’t allowing medical cannabis YET.
WHAT thoughts or info do you all have?
Darlia

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I can’t find anything on St. Luke’s website about clinical trials for neuropathy. Could you please send me a link. I do know that Washington University medical school is doing some work with neuropathy.

@darlia

I live in the state of Missouri. I know that KC, St. Luke’s Hospital specifically conducts clinical trials in Neuropathy. My thoughts about being involved. Depends on your situation. Personally I would be willing to be involved if the treatment involved medical cannabis because it’s natural. At this time though the state of Missouri isn’t allowing medical cannabis YET.
WHAT thoughts or info do you all have?
Darlia

Jump to this post

Hi @steeldove – did you try searching on the link posted inside the discussion description at the top? You can search to see what clinical trials are close to where you live.

John

@darlia

I live in the state of Missouri. I know that KC, St. Luke’s Hospital specifically conducts clinical trials in Neuropathy. My thoughts about being involved. Depends on your situation. Personally I would be willing to be involved if the treatment involved medical cannabis because it’s natural. At this time though the state of Missouri isn’t allowing medical cannabis YET.
WHAT thoughts or info do you all have?
Darlia

Jump to this post

Yes, I’ve checked that link for clinical trials, but found nothing that would apply. Most of the studies involve neuropathy caused by diabetes or chemotherapy, and my form of neuropathy is not connected to those condition.

@darlia

I live in the state of Missouri. I know that KC, St. Luke’s Hospital specifically conducts clinical trials in Neuropathy. My thoughts about being involved. Depends on your situation. Personally I would be willing to be involved if the treatment involved medical cannabis because it’s natural. At this time though the state of Missouri isn’t allowing medical cannabis YET.
WHAT thoughts or info do you all have?
Darlia

Jump to this post

Hi @steeldove, here’s another search link but I’m guessing it might not show anything either. I think a lot of the current reseach is in diabetic or chemo induced neuropathy but I’m not sure.

https://clinicalconnection.com/search-clinical-trials

Another idea might be to make contact with local neuropathy support group if you are able to locate one. Here is a site to help find something closer to you:

https://www.foundationforpn.org/living-well/support-groups/

John

@darlia

I live in the state of Missouri. I know that KC, St. Luke’s Hospital specifically conducts clinical trials in Neuropathy. My thoughts about being involved. Depends on your situation. Personally I would be willing to be involved if the treatment involved medical cannabis because it’s natural. At this time though the state of Missouri isn’t allowing medical cannabis YET.
WHAT thoughts or info do you all have?
Darlia

Jump to this post

Thanks, John. I’ve been connected to the Foundation for Peripheral Neuropathy for a while. The only website I’ve found that offers truly useful information is http://neuropathycommons.org While I just moved back to Missouri after living in Massachusetts, I may request an appointment with Dr. Oaklander who seems to be doing the most relevant research and work with small-fiber neuropathy.

@steeldove I hear you about the neuropathy. So many people presume if someone has neuropathy to be diabetic or chemotherapy. I do not know why I have neuropathy and it has done me no good to even ask any medical person why I have it. They see depression in my chart and I do not have a chance of getting any farther. Any pain I have is caused by depression. No wonder the depression has gotten to the point it has now. Depression is the reason for everything else negative in a life.

There is no cure and the meds prescribed do horrid things to my psyche.

I attended the Minnesota Neuropathy Association meeting on August 31st, The guest speaker was Dr. Jeffery Allen, a neuromuscular specialist and clinical investigator, discussed clinical trials at UMN that are currently enrolling and those that are expected over the next year. Including trials relevant to inflammatory neuropathies, diabetes, hereditary neuropathies, and others. The main part of his talk was about painful diabetic neuropathy and his research and involvement with an ongoing clinical trial for VM202. Medication is injected into the calf muscles and may promote blood vessel growth and nerve regeneration. I attached a PDF with details for the clinical trial which is part of study Gene Therapy for Painful Diabetic Neuropathy listed on the ClinicalTrials.Gov website.

More locations are specified on their website here: https://www.clinicaltrials.gov/ct2/show/study/NCT02427464?show_locs=Y#locn

Also, there is an article “VM202 gene therapy eases symptoms in painful diabetic neuropathy” on Diabetes.co.uk website about the treatment:
http://www.diabetes.co.uk/news/2015/Mar/vm202-gene-therapy-eases-symptoms-in-painful-diabetic-neuropathy-91359885.html

John

Shared files

VM202-Trial (VM202-Trial.pdf)

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