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DIfferent sort of research opportunity

Posted: Sun Jan 07, 2018 10:47 pm
by Rustsmith
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.

Re: DIfferent sort of research opportunity

Posted: Mon Jan 08, 2018 6:22 am
by ViewsAskew
Very interesting!

Re: DIfferent sort of research opportunity

Posted: Mon Jan 08, 2018 5:48 pm
by Polar Bear
That is soooooo interesting. Knowledge is everythng.