Need more clinical trial participants? Treat the human subjects well!

I have long been a proponent of clinical trials, having joined my first trial as a "de novo" person with PD (PWP) eleven years ago. And for nearly as long, I have been a patient advocate who believes that the US has an imperfect system where in general, its human clinical trial participants do not receive the respect or treatment that they deserve.

Why does the scientific community have such difficulty finding subjects for clinical trials?

• The system is difficult and confusing to navigate.*
• Interested participants call and ask about enrollment, but no one calls us back.*
• We take part in studies, but we never hear the outcome of the trial.*
• Many of us live have advanced PD. We may not drive any more, and the study center doesn't provide transportation.*#
• Many of us are on disability, and the study center doesn't reimburse all of our costs.*
• If we are injured as a result of a clinical trial, most trials do not provide care for our injuries.*#
• Our opinions are not valued.*

It is important to remember that EVERYONE in the drug development chain: companies, researchers, doctors, nurses. admin staff, cleaning teams, everyone, EXCEPT human participants are paid.Human trial participants donate their time and their health. How can it be considered unreasonable for us to request that all of our expenses be paid? Or that we be able to provide input about the trial?

*2014 PD trial participation Survey" by J. Burns

What do patients want? What do patients deserve? How can the system change so more people are willing to participate in research?

• If you expect us to be on time, we expect the same of you.

# CISCRP Perceptions & Insights

**MichaelJFox.org website 2014

• Make participation enjoyable. It is possible.
• When planning tests and activities, consider our health and well being first. How will different times or combinations of requirements affect us physically or psychologically?
• Make all travel arrangements, and prepay for them as well.
• Make and prepay for any required hotel reservations.
• Pick us up at the airport.
• Give us vouchers or a reasonable per diem for meals at local restaurants.
• Provide care for us (including long term care) if we are injured as a result of the trial.

All of this is possible. When I went to the Institute for Neurodegenerative Disorders (INDD) for every other year SPECT scans, the folks at INDD made all arrangements, including air travel, limo pick up from a NY airport, hotel room, pus prepaid and vouchers for meals. My cousin from Chicago once met me there and we had a delightful time sightseeing in New Haven in between my tests. All of the people to whom I told my experiences wanted to know "how could they do the same? How could they join that trial?" Believe me, if researchers treat us well and make the experience as enjoyable as possible, the word will spread, and there will be little trouble recruiting participants.

So when I hear the common lament that "we can't afford to do that," I would like to remind the research community that 85% of clinical trials are delayed, and 30% never get off the ground due to lack of participation. And although 60% of PWP say they are willing to participate in a clinical trial, fewer than 10% do.**

The original requests for reimbursement for travel and for greater patient involvement are nearly a decade old. Do researchers really have the time and the money to waste by not making changes now that will provide better treatment to the volunteers?

Treat us as if we were a precious commodity. We are.

email us directly at: Sheryl@pdplan4life.com

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