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The Power to Speed a Cure for Parkinson's Is in Your Hands

The Power to Speed a Cure for Parkinson's Is in Your Hands

We introduced Fox Trial Finder in the fall 2011 issue of our newsletter, Accelerating the Cure. Check out the article below or click here to read the rest of the issue.

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In July, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) launched the beta version of Fox Trial Finder (www.foxtrialfinder.org), a smart and simple Web-based solution to connect willing volunteers with the Parkinson’s disease (PD) clinical trials that urgently need them. The Foundation is optimistic that Fox Trial Finder will bring more volunteers into PD trials across the United States — and eventually, internationally.

“Today, America is waiting expectantly for a new generation of scientific breakthroughs — in cancer, AIDS, Alzheimer’s disease and, of course, Parkinson’s disease,” Michael J. Fox wrote in an Op-Ed for the San Francisco Chronicle last spring. “Yet we’ve lost sight of a critical element of any success — our own active engagement in the process.”

An urgent need

Today, an estimated one million people in the United States and more than five million worldwide are living with Parkinson’s disease. 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. Yet today, as many as 80 percent of clinical trials face recruitment challenges, which significantly increase costs and delay progress toward breakthroughs. Fox Trial Finder addresses these challenges head-on.

“By streamlining the flow of participants into trials, Fox Trial Finder will play a role in reducing the length and cost of Parkinson’s clinical trials, helping bring new treatments to patients faster,” said Todd Sherer, PhD, CEO of MJFF.

How it works

Using state-of-the-art technology, Fox Trial Finder compares each volunteer’s specific information — such as location and medical history — with trial eligibility requirements. The site then provides a list of nearby studies that are the volunteer’s best potential matches. The service is available to people who have Parkinson’s, but also to those who do not, because trials need both patients and controls. In addition to personalized matching, Fox Trial Finder also streamlines communication between volunteers and trial teams.

Fox Trial Finder takes volunteers’ privacy very seriously. All information is protected by industry-standard security protocols. Volunteers’ names and contact information remain hidden unless the volunteers choose to share this information with a trial team.

Additional Fox Trial Finder features

  • A secure messaging system allows you to connect directly with trial coordinators (or vice versa) without revealing your identity.
  • Contact information for trial coordinators is posted within the online community if you prefer to contact a clinical site directly.
  • You can save a personal profile in order to receive ongoing email alerts about new matches and messages from trial teams. Even if you don’t have a match on day one, Fox Trial Finder will email you with an alert when a new trial begins recruiting individuals with your specific characteristics. New trials start recruiting each month.

Both interventional trials testing new therapeutic approaches and observational studies that help scientists learn more about the nature of Parkinson’s are included in Fox Trial Finder, and study sites can be found across the country.

An enthusiastic response — but we still need your help

The early response to Fox Trial Finder has been encouraging. So far more than 625 people have signed up. We need to register thousands more to create a pool of volunteers whom trial teams can call on to speed studies toward the breakthroughs we urgently need. The power of Fox Trial Finder grows with each person who registers. Create your own profile today, and share Fox Trial Finder with friends and family who might have an interest in participating in clinical trials for PD.

“I know firsthand how motivated the Parkinson’s patient community is to play a proactive role in finding the cure for PD,” said Israel Robledo, a member of the PD community from Midland, Texas. “Fox Trial Finder is designed to help translate that motivation into action. The site is easy to use, and the cutting-edge technology it employs to specifically match individuals to clinical trials is what we need to get results.”

“The most important step is for all of us to recognize that that we can be part of the answer — and to act on that knowledge by donating, volunteering or participating in a trial,” Michael wrote in the Chronicle last May. “Because involving everyone is the fastest way to bring our wait for a cure to an end.”

Be part of the answer. Create your profile today at www.foxtrialfinder.org!

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