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.
DIfferent sort of research opportunity
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DIfferent sort of research opportunity
Steve
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
https://www.mayoclinicproceedings.org/a ... 0/fulltext
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.
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Re: DIfferent sort of research opportunity
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.
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.
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Re: DIfferent sort of research opportunity
That is soooooo interesting. Knowledge is everythng.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation