This is very good (and useful) information, Jean. I had no idea what to expect when I signed up for the Spheramine trial (aka STEPS trial in phase II) .

As many of you know, I participated in a trial 8 years ago. The protocol was changed since Phase I participants saw such positive results. We are going to be followed for 10 years (or life). I got my call just this week reminding me it was time for my annual work-up.

The Nurse Research Coordinator for my trial is in charge of giving me information to make arrangements for each visit . I live in TN, and the facility trial base is at Emory (GA). This means we (I can take someone with me) have to either fly or drive and claim mileage, stay overnight, and have arrangements to get to and from the testing facility, and of course we have several meals to eat. Under our agreement, all expenses are paid (partner included) . I also have a thorough exam by the research study physician and have an MRI.

I think the worst part of all the finger tapping, palm turning, pull-test stuff is that I must be tested when "off," i.e. without meds for 12 hours. I sure ain't sprinting on that morning! Then I am given my regular morning dose and am tested again when I turn "on." There's a shorter neurological test that is videoed in the "off/on" modes, and all of this put together is invaluable information.

The commitment to a clinical trial should not be taken lightly. I had an experimental surgical trial, so at first visits were weekly, then bi-weekly, then monthly to quarterly, and bi-annually to annually. That may sound like a difficult commitment, but if we want better therapies and (hopefully) one day find a cure, we need to find a suitable trial and sign up.

Peg