@colleenyoung

Colleen, thanks for your detailed reply to my question about observational studies! I'll follow up on the Connect links you provided. I am going to telephone the study's coordinator to see if I have it right, that I can skip the skin biopsy consent and the lumber tap consent and still participate in the study with the possibility/likelihood that I will be asked to cooperative with some testing.

On a side note that I do not intend to purpose, I have to add that the 17-page consent form would probably not stand up to judicial scrutiny because of the vagueness of what one is being asked to consent to (i.e., occasional testing vs. testing every week indefinitely). One can only truly consent to something if one understands what one is consenting to. Just a side note, because in this actual study I can always refuse to cooperate in testing and they are not going to somehow hold it to me because I provided consent back at the beginning.

Thanks again,

Don