DIfferent sort of research opportunity

For everything and anything else not covered in the other RLS/WED sections.
Rustsmith
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DIfferent sort of research opportunity

Postby Rustsmith » Sun Jan 07, 2018 10:47 pm

A year or so ago, I joined a different discussion website called Patients Like Me. They started as an ALS support group and have expanded. In addition to a discussion page (which doesn't work as well as this one), they also provide a way for you to store your treatment info. They also have one of the most simple ways of searching for applicable Clinical Trials (which is what I have been using it for). You can also enter all of your medical conditions, so you aren't limited to just being an RLS patient.

However, they have just started a new program called "Digital Me". It is a research program that intends to use computational biology to try to identify new things about diseases. As I understand it, they have started with neurological diseases but intend to branch out into other areas in the future.

I signed up as an RLS patient and was immediately accepted. Participation is very simple. A lab tech set up an appointment to come to my home to get a blood sample (4 medium sized tubes). I also was asked to fill out a questionnaire about things like my current meds, how much time I spent outside in the sun during the last week, if I had consumed coffee or alcohol, etc. As I understand it, my samples will be analyzed for a wide variety of proteins, etc. not the normal run of the mill sort of tests. I will probably be asked for another sample in 3 months. The tests that they will run on those future samples will depend upon what they learn from my test results along with others.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

ViewsAskew
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Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: DIfferent sort of research opportunity

Postby ViewsAskew » Mon Jan 08, 2018 6:22 am

Very interesting!
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

Polar Bear
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Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: DIfferent sort of research opportunity

Postby Polar Bear » Mon Jan 08, 2018 5:48 pm

That is soooooo interesting. Knowledge is everythng.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation


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