Michael J. Fox Foundation 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 this post, Debi reflects on the successful recruitment of PPMI in just over two years, and what it means to be a part of its initial achievements, as a participant in the study.
This month our Foundation announced the completion of recruitment of PPMI. While it’s a major milestone for MJFF, and I think, the PD research field on the whole, reaching this goal provides an opportunity to reflect on just how hard it is to recruit for clinical research.
When we prepared to launch PPMI, we learned that recruiting one patient, per study site, per month was an aggressive goal; in fact, most study sites recruit well below that rate. And it’s also expensive: Statistics show that it can cost as much as $10,000 to bring just a single volunteer into a study.
In the 30 months since PPMI launched, we’ve made improvements on that pace. Over 80 percent of PPMI’s sites beat that one patient, per site, per month goal. Pretty good! Across all sites, we averaged 1.33 people per site per month. Not bad at all! The top recruiting site had 2.5 people consenting per month. Pretty amazing really!
But while we’re glad to have improved on our goal, the reality is, this pace is still way too slow. And when the pace is slow, it means it takes longer to get to the answers we seek. We need more clinical trial participants if we’re to have any chance of finding improved treatments for PD, so I invite you to check out our clinical trial matching tool Fox Trial Finder to learn more about how you can get involved.
Our ability to recruit this study at an impressive pace (thanks to all the study participants—you made this happen!) isn’t the only thing that has been remarkable about PPMI. What’s also impressive to me is that so many of my fellow study participants have stayed enrolled. PPMI is a real commitment, and it requires giving time, energy, and our bodies to participate in this worthwhile search. I’ve consistently been inspired by tales of volunteerism and willingness from those involved in PPMI. Only 15 of the people who have enrolled in the study have withdrawn. That’s over 97 percent of people sticking with it— an incredible statistic in PD research. And, again, incredibly important in terms of helping us make progress.
This kind of commitment makes me more confident than ever that, as a community, we will find a Parkinson’s biomarker, and ultimately, new and better treatments for the disease.
