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Why Clinical Trials

Today, an estimated one million people in the United States and more than five million worldwide are living with Parkinson's disease (PD). PD affects one in 100 people over the age of 60, though some people are diagnosed as young as their 30s or 40s. In the United States, 60,000 new PD cases will emerge this year alone. And as the U.S. population ages, this number will only grow. According to a recent Wall Street Journal opinion piece by Nobel laureate Stanley Prusiner and former Secretary of State George Shultz, three out of five Americans will suffer from a nervous-system disease such as Parkinson's or Alzheimer's.

Clearly, the need for high-impact investment in research has never been more urgent. But while financial investment is critical, dollars alone will not take us across the finish line in pursuit of therapeutic breakthroughs. The active involvement of Parkinson's patients and their loved ones in clinical research is vital to finding the cure.

Clinical trials and studies play a critical role in the development of new and better medicines. In Parkinson's and across many diseases, there is a significant opportunity to streamline and increase the flow of willing volunteers into these studies.

Underenrollment in trials slows research progress and deters potential funders from investing in research — and we all pay the price in terms of higher costs and longer time horizons to therapeutic breakthroughs. Currently, 80 percent of clinical trials finish late due to difficulties enrolling participants. Even more alarming, nearly one-third of trials fail to recruit a single subject and cannot ever begin.

According to a 2005 Harris Poll survey commissioned by The Michael J. Fox Foundation, only one in 10 people with PD takes part in trials. At MJFF, we understand that real-world issues, including work, distance and finances, can prevent even the most motivated volunteers from taking part in a trial. We also realize that simply identifying appropriate nearby trials can in itself be a hurdle to getting started. Yet in spite of the challenges, we know that this low participation rate belies the Parkinson's community's significant interest in stepping up.

For patients and their loved ones alike, the reasons to participate in a trial are numerous. Recent research conducted at the University of Lisbon in Portugal identified the prevailing factors that motivate people with PD, the most prevalent of which was a desire to help the advance of science. The study also highlighted participants' overwhelmingly positive response toward clinical trials: approximately 67 percent reported that they would participate in the same trial again and that they were willing to participate in a future trial.

The dedicated engagement of the PD community — both people with and without PD — will make progress toward a cure come more swiftly. You can be an agent of change. Take a more active role in your own health care. Contribute to the understanding of Parkinson's disease. Volunteer for a clinical trial, and you could be the key that helps us unlock a cure to Parkinson's.

Create a profile on Fox Trial Finder (www.foxtrialfinder.org) today.

July 2011