Restless Legs Syndrome (RLS) Discussion Board

As with several sticky posts, these thread are cummulative, so the first posts may be years old. To see the most current posts, go to the last page.

The Johns Hopkins Center for Restless Legs Syndrome


Current Studies

"IV Iron Metabolism In Restless Legs Syndrome"
This protocol will determine whether an IV dose of Fe58 can be adequately detected in a sample of CSF.

"Determining The Genetics Of The Restless Legs Syndrome"
This protocol seeks to determine the familiarity of RLS as well as the likely mode of inheritance.

"Prolactin Levels In Restless Legs Syndrome"
This study examines prolactin secretion as a possible biological marker for dopamine function in the brain and it's characteristics in RLS compared to control subjects.

"A Trial Of Gabapentin In Restless Legs Syndrome" (Polydefkis)
This protocol seeks to determine the benefit of Gabapentin in RLS patients with and without small fiber peripheral neuropathy.

"Systemic Iron Metabolism Restless Legs Syndrome"
This study will examine the iron absorption and turnover between those individuals with RLS and those without.

"Iron-related Proteins in Lymphocytes from RLS and Control Subjects"
This study examines the Lymphocytes in the blood to answer specific questions regarding iron regulatory proteins.

"Dopamine and Iron in Restless Legs Syndrome"
This study examines the differences in D2R (a dopamine receptor),
DAT (a transmitter), DA release, and prolactin at night in those individuals with Restless Legs Syndrome (RLS) and those without.

"Dopamine - RLS Connection"
This study will be looking at the concentration of various chemicals in your blood and brain. We are also studying changes in hormones, which can be found in your blood. We will be looking at various aspects of sleep and wake behavior.

For more information or if you might be interested in participating in one of their studies, visit online http://www.neuro.jhmi.edu/rls/


Hazel

The We Move org needs our help! They are trying to foster awareness of movement disorders, including RLS. Please go to this site:

http://www.life-in-motion.org/lwc/lwc.asp

Fill out the info, and letters will automatically be generated and sent to your congressperson and senators.

Please, so this ASAP. The event is Sept 14 and 15, 2006. Your representatives need to hear from you soon to know that this is important to you.

Please if you haven't done so, take the time right now and go to the above link... Don't think it might be silly or won't help. It really does count for something, even if it is only one letter or hundreds. Speak up, stand up, let them know we are out there! It is important for us to get the word out and make people understand that we are real victims and not hypochondriacs. Hazel

WOW,I was in Dr Early's clinic for awhile!
I get alot of requests from them to do studies.

I haven't looked at these in awhile. . .wow! A lot of studies. We are moving up in the pharma world. Not the best thing, but I'd rather have them finding drugs for it than doing nothing.

You have to go to the site to actually find out about the studies, such as where they are being held - I just included the list to show how many of them there are. I hope someone here is close to one and is in the position to enter a study. It is really hard to want to do with daily RLS, though.

http://clinicaltrials.gov/ct/gui/action ... iting=true

15 studies were found.
1. Recruiting Long-Term Study Of Ropinirole In Restless Legs Syndrome
Condition: Restless Legs Syndrome
2. Recruiting SWITCH:Restless Legs Patients Switched to Ropinirole From Pramipexole
Condition: Restless Legs Syndrome
3. Recruiting Sequential Compression Devices for Treatment of Restless Legs Syndrome
Condition: Restless Legs Syndrome
4. Recruiting Long-Term Safety Of Ropinirole XR In Patients With Restless Legs Syndrome
Condition: Restless Legs Syndrome
5. Recruiting Pilot Study of Botulinum Toxin Type A for the Treatment of Restless Legs Syndrome
Condition: Restless Legs Syndrome
6. Not yet recruiting 8-Week Polysomnography Study of Ropinirole Controlled Release for Restless Legs Syndrome (CR-RLS)
Condition: Restless Legs
7. Recruiting Ropinirole Tablets In Young Patients With Restless Legs Syndrome
Condition: Restless Legs Syndrome
8. Recruiting Sleep Disorders Management, Health and Safety in Police
Conditions: Sleep Disorders; Sleep Apnea, Obstructive; Restless Legs Syndrome; Sleep Disorders, Circadian Rhythm; Sleep Initiation and Maintenance Disorders
9. Not yet recruiting Comprehensive Police Fatigue Management Program
Conditions: Sleep Disorders; Sleep Apnea, Obstructive; Restless Legs Syndrome; Sleep Disorders, Circadian Rhythm; Sleep Initiation and Maintenance Disorders
10. Recruiting XP13512 Extension Study in Patients With Restless Legs Syndrome
Condition: Restless Legs Syndrome
11. Recruiting XP13512 vs. Placebo in Patients With Restless Legs Syndrome
Condition: Restless Legs Syndrome
12. Recruiting A 6 Week Trial to Study the Efficacy and Safety of a Starting Dose 0.25 mg Pramipexole (Mirapex) in Patients With RLS
Condition: Restless Legs Syndrome
13. Recruiting Restless Legs Patient Study On Absorption, Distribution, Metabolism And Excretion Of Ropinirole And The Effect Of Food
Condition: Restless Legs Syndrome
14. Recruiting Long-Term Efficacy, Safety and Tolerability of Pramipexole in Patients With Idiopathic Moderate to Severe RLS
Condition: Restless Legs Syndrome
15. Recruiting The Effects Of Ropinirole On Mood Or Mild Depression In Patients With Moderate To Severe Restless Legs Syndrome
Condition: Moderate to Severe Idiopathic Restless Legs Syndrome (RLS)

How can we find the results of the clinical trials that have been done?

How wonderful it is that we can come here and find all this information!

Thanks to all who make this possible!

It depends. Later stages are published in journals - that shows efficacy, etc.. I imagine that the FDA keeps reports somewhere, but don't know where. I am sure someone else knows and will report. On early stage results, the company often makes a report and the media may or may not pick up on it.

Maybe Josh or someone else knows if there is a place to go to easily find all results. I haven't heard of that.

I believe they results are usually written up in the "Night Walker" quarterly magazine put out by The RLS Foundation. You can read back copies of it on www.rls.org (have forgotten what title to look under so you will have to scan thru the site to find info)
I remember there was a article in one of the Night Walkers about the brain study done by Penn State, where donated brains of deceased RLSer's were researched. I also believe the article about researchers finding the gene that causes RLS is also written in the Night Walker.

You could probably also just type in Recent research on RLS into Google and find the newest info on RLS.

I will try to find any info available and post it.

Here is the link where alot of new information of research is listed

http://www.rls.org/NETCOMMUNITY/Page.as ... &srcid=479

I just ran across a link to Centerwatch in the NY Times. There currently are several RLS studiesaround the US.

You need to go to the link above to see more about each of these.

Louisiana

Baton Rouge : Gulf Coast Research Associates, Inc.
Restless Leg Syndrome associated sleep disturbance

Michigan

Bingham Farms : QUEST Research Institute New!
Research study of investigational medication for people with moderate to severe Restless Legs Syndrome

Minnesota

Minneapolis : F.S. Abuzzahab, Sr., M.D., Ph.D.
Protocol 248.616 Phase IV Randomized, Double-Blind, Active and Placebo-controlled, 6 week Trial to investigate the efficacy and safety of a starting and fixed dose 0.25 mg Pramipexole (Mirapex) in patients with idiopathic Restless Legs Syndrome

North Carolina

Raleigh : Wake Research Associates
Do you suffer from Restless Leg Syndrome?

Salisbury : Central Carolina Neurology & Sleep, PA
Extended Release Formula Double Blind/Placebo Study for Restless Legs Syndrome

5. Recruiting Pilot Study of Botulinum Toxin Type A for the Treatment of Restless Legs Syndrome

...Botluinum, as in... Botulism food poisoning... as in the most toxic neurotoxin known?

Are they MAD? This isn't growing mold into penicillin.. This stuff has an LD50 of 0.000005-0.00005 mg/kg.

No thanks...

Yes, that is what it is - same thing they use for wrinkles in movie stars and people with money who want an unwrinkled face. One of our older members who isn't with us any longer tried this about two years ago. It was absolutely cutting edge at the time.

If you have cramping/spasming with your RLS/PLM, botox might be a good move.

I had trauma-related spasms in my anterior scalene neck muscles two years back, and botox was a godsend for that. For someone with, say, painful knots, it might be so also.

Yeah I had forgotten that was what botox was..

But I would assume its been processed into some non-contaminating form, whereas the study talks about using a "toxin" and not botox specifically or a not-so-dangerous other egineered version.. Poor wording on their part perhaps

Zach, I really think it's still a toxin when injected...not sure, but I think so. It's the toxin that makes the muscles stop moving. Your doc has to be very, very good; people have become very ill from these procedures. Not sure if anyone has died or anything, but I see to recall reading that, at least when it first came out, that it didn't always have a happy ending.