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I just received a letter from the clinic that I go to for my rheumatologist. It is stating that they are now participating in a clinical trial studying an investigational medication for people with scleroderma. My question is, I know some of you have talked about studies and being involved in them. I would like to hear some opinions on this if anyone could share. I see my doctor on Friday and I'm sure they are going to ask me.

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Hi Gigi,

 

I've agreed to participate in every study my doctors have asked me to and I think I'm up to 6 now. Three of them involve blood draws, most of them involve questionnaires, one that was investigating a possible link between pulmonary hypertension and glaucoma got me a whole morning of extensive eye exams. I think most of them wanted some level of access to my medical records.

 

None, so far, have been trials of new medications, but I think I'd agree to that so long as it didn't change the regimen that is working so well for me.

 

I figure that anything I can do that'll help others get quicker, better diagnoses and treatment, hey, it's worth it.

 

JJ

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