I tried to post under the API Generation Study info that you posted a while back, Julie, but I can't find it. I did read it, and it was more alarming than the material presented to me at my study site, University of PA.
Any way, to update:
Had my first visit and there were some memory and cognitive tests. Pretty basic. No problem. Lots and lots of psychological, lifestyle questions. The meaning of APOE was drilled in - over and over and over. First, I read about it. Then, I saw a slide presentation. Then I got tested on my understanding of the different categories of APOE. Of course, I already know that I am 4/4, but I am getting treated like everyone else. After that, a psychologist/counselor had a long discussion with me, making certain that I understood the ramifications of getting my results. Then, concern for my mental state and perhaps the chance to participate in the second part of the study, where I would get CAD106 or placebo. After I got home, there were many follow up calls. Am I okay? Depressed? That kind of thing. It was fair for people not know their APOE status.
Second visit was exhausting, all day long. This time, there were extensive memory and cognitive tests. Plus, my vitals, including blood draw (didn't pass out!), blood pressure, EKG, weight, height, urine sample (checking for drugs), another cheek swab, and MRI. Handled the MRI, primarily because I could get classical music, specifically piano, and some kind of sedative - which I asked for. My local doctor forwarded my medical records. Lots of state of mind testing - suicidal? depressed? hopeless? Life style questions: exercise, diet, etc.
One problem is that I don't sleep. My mother recently died and my grandson was in the hospital for 11 days. And now I have to think about being 4/4 again. The medical doctor involved in the study also called with questions. Had to give them a list of all vitamins and drugs that I am taking. He ruled out all of the PMs because the antihistamine leads to confusion. They help me sleep, so he caved in and I can take them, but not on test days.
So, all of the above tests have to be ok. Then I go back for a PET scan, about the amyloid plaque and whatever else - probably more memory and cognitive tests.
Oh - They are getting people for this study from Gene Match, which I enrolled in. U of Penn is going to have 10 people. Gene Match also called to make sure everything was going ok and did I have any problems with anything?
What do I think? The U Penn staff is extremely professional, organized, and really nice. I trust them to look out for me. I am glad to be part of the study. If I am qualified to continue and get the CAD106 and not the placebo, I am certain they will be glad for the information that I can provide but they will also have my best interests.
Keep you posted. Good weekend everyone.