This is a tale of two "hypothetical" clinical trials:

Trial #1: sends the participant (and a companion) tickets for plane/train travel to the study center

Trial #2: requires that the participant (and a companion) make & pay their own travel arrangements (plane or train) for travel to the study center (to be reimbursed some time later)

Trial #1: makes the hotel reservations and pays for the rooms in advance, and provides vouchers for all meals in the hotel

Trial #2: requires the participant & companion to find their own hotel room and pay for it - to be reimbursed later

Trial #2: does not reimburse for the companion's hotel and food expenses

Trial #1: pays for all the participants expenses up front

Trial #2: reimburses part of the expenses, but only "cuts a check quarterly".So the participant must wait (sometimes months) to be reimbursed.

Trial participant #1 has no economic burden to participate in the trial.

Trial participant #2 and companion have great economic burdens - especially if s/he is on disability - as many of us are - having to pay out of pocket for expenses and then wait for months for reimbursement. And then what if you find out the companion/family member's expenses will not be reimbursed?!

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So if you decide to put your life on the line for an experimental treatment, which scenario would you choose?

Our voices need to be heard by the people who run clinical trials. We expect to be treated with respect and dignity. Informed consent documents must require that our expenses be covered and that arrangements for travel & hotel are done for us. NOT require us to find our own hotel somewhere near the study center. And NOT to promise to provide reimbursement (in part) some time in the future. All arrangements & expenses should be made by the study center & paid for in advance.

Treat us with respect & dignity. We deserve it.

These guys have to start thinking of us as their equals and not their test subjects. I say "STOCK OPTIONS!"

If clinical trials are to be representative of our nation's diverse population, sponsors must recognize and provide for the unique needs of each group. It seems to me that pre-payment, or at the very least, prompt reimbursement (1 week) for all trial- related expenses, should be required. This becomes all the more essential when something goes very wrong and expenses quickly reach astronomical proportions.

Along these same lines, trial sponsors should also foot the bill for participants' caregivers' food, lodging, and travel expenses. Recruiting people with advanced or end stage PD is already difficult without making it more so.

sheryl