Research at a Standstill

[Oozz]

Seems like research has been at a standstill lately. I’m not seeing much published and there are hardly any new clinical trials going On (it was sparse to begin with). Has anyone else noticed this?

[Rustsmith]

To a degree, I would agree. Most of the recent publications that I have seen have been the sort of fluff articles that are written to pad a professor's resume to qualify for tenure. There are not many presentations being made about RLS at the Sleep conference this year, which is a change. As for clinical trials, there are a couple that are either recruiting or ongoing. There is a very large, multicenter trial looking at a non-invasive device that is sort of like a modified TENS unit. I tried to get into that one but they decided that I was too severe. There is also one in Houston that is currently recruiting that will be looking at the new med that will hopefully treat augmentation. This will be the second trial for that med. The first, small trial looked promising enough to justify a larger test. There are a couple of others, one that is looking at magnesium supplementation, a couple of others to qualify Horizant for teens and finally one that is looking at treating RLS in memory care facilities as a way to manage the symptoms of "Sundowners".

[Oozz]

There is also one in Houston that is currently recruiting that will be looking at the new med that will hopefully treat augmentation. This will be the second trial for that med. The first, small trial looked promising enough to justify a larger test.

Do you think it is money or interest that is the bottleneck to more research?

[Rustsmith]

I think that it is a combination of things. First, I suspect that numerous research projects that are underway, but not close enough to having substantial results to publish. It takes my grad stu8dents four years to get to the point of being able to publish their work. Second, a combination of funding and a shift of interest toward higher visibility conditions, such as the recent breakthrough into Parkinsons. Finally, we are at a point where we are sort of in the middle of the RLS research cycle. They have progressed the adenosine line of work and the new anti-augmentation drug research to the point of having shown proof-of-concept. That means that the next step is to generate enough grant requests to get a few approved for funding. All that takes time.

Also, there is a great deal of work being done on the DNA side of RLS. This is not something that many patients get involved in directly, but the work occurring. I saw a preliminary presentation a couple of years ago about work looking at iron transport across a synthetic blood-brain barrier. If they can work that out and figure a way to improve it, that would be of great benefit to people like me who have high ferritin levels and just cannot get it into the brain, presumably due to a partially functioning protein involved in metal ion transport across the blood-brain barrier.

Finally, what we are not seeing, but is probably still happening is research into related basic science. My wife has MS and many years ago, the emphasis on doing research into the immune system paid great benefits for the other immune conditions, such as MS, Lupus and rheumatoid arthritis. I am sure that there is basic research that is happening for conditions such as Lewy body dementia and Alzheimer's that will have knock-on benefits for things like RLS, Parkinsons, etc.