MJFF Co-Founder and Executive Vice Chairman Debi Brooks has not only been instrumental in conceiving, structuring and fundraising for the Parkinson’s Progression Markers Initiative (PPMI); she also is participating in the study as a control.
This is the first time Debi has volunteered for clinical research, and she is blogging about what she learns along the way. In her first post (below), she reflects on her decision to enroll in the study.
Early in our planning for PPMI, our goal was to recruit 30 people per site — 20 newly diagnosed Parkinson’s patients, and 10 controls — by the end of 2012. That meant each site needed to recruit roughly one PD patient per month and one control every two months, which seemed doable to me. But the immediate reaction from the scientists in the room was that this was an incredibly lofty goal, maybe even impossible, due to the routine challenges they face in finding volunteers for studies. It was a striking exchange, and it inspired me to enroll.
I’m fortunate in that I don’t face some of the everyday hurdles that can stand in the way of participation — like work obligations, distance, financial hardship... In fact, my being a part of PPMI furthers the mission of the organization I work for. The opportunity to walk in the shoes of a research participant is invaluable. So much of my work is about making it easier for people to act on an intention to get involved. Already, I am finding out more about how we can help facilitate this through increased clinical trial participation.
One of the things I’ve learned at the Foundation is that to get the most out of our investments in research, we as a society need to ask a lot, of many people, along the way. Scientists innovate — they get us started. But scientists alone cannot translate ideas into tangible treatments that make a difference to human health. This requires the involvement of the patient community.
PPMI is devoted to finding PD biomarkers, which could help us understand the cause of the disease and how it progresses over time. Clinical data and biological samples are being collected from people with and without PD. Scientists will compare patients’ information with that of control subjects. And I am participating as one of these controls. I look forward to sharing my journey with you.
To learn more about PPMI, visit www.michaeljfox.org/PPMI.
To connect with clinical trials near you that are looking for PD or control volunteers, create a profile at Fox Trial Finder (www.foxtrialfinder.org).
