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SF Gate – Scientific progress starts with us

SF Gate – Scientific progress starts with us


Today, America is waiting expectantly for a new generation of scientific breakthroughs – in cancer, AIDS, Alzheimer’s disease and, of course, Parkinson’s disease. Yet we’ve lost sight of a critical element of any success

 – our own active engagement in the process. 

As Baby Boomers tumble headlong into their retirement years, such biologically complex conditions loom ever larger while drug development moves at what often feels like a snail’s pace. The dire shortage of participants in clinical research is a primary contributor to this frustrating status quo.

Across all diseases, according to 2003-2004 research at the National Institutes of Health, 85 percent of clinical trials finish late because of trouble recruiting volunteers. On average, these trials are extended by up to 40 percent of their expected length. Even more troubling, nearly a third of trials fail to recruit a single subject and cannot ever begin. Yet it’s a secret that hides in plain sight, rarely discussed and little known even to those who care most passionately about progress toward new treatments and cures for disease – patients themselves.

The Michael J. Fox Foundation’s mission is to cure Parkinson’s disease, a disorder that stands to impact increasing numbers of lives as the U.S. population ages. We’re doing everything we can to identify and dismantle roadblocks that stand in the way of research progress. So far we’ve invested more than $230 million in research to speed new and better treatments for the disease. But we’ve been aware for years that dollars alone won’t solve this problem. In particular, money cannot buy the critical contributions made by clinical trial volunteers.

Our foundation hears from patients every day, and we understand the real-world issues that can prevent willing volunteers from taking part in a trial: distance, work, finances (to name just a few), as well as difficulty getting information about trials. We’re taking action to address these issues specifically for Parkinson’s disease trials. This summer we’ll be launching a Web-based tool, Fox Trial Finder, to proactively alert people to trials in their area that need folks like them.

We’re also advocating a range of ideas to increase awareness and participation in clinical trials: from tax incentives to employer programs to bringing the trials to volunteers (via technology or on-site visits) to simply spurring doctors to encourage patients to participate in trials. But there’s room for everyone’s strategic contribution to help solve this challenge. The need is urgent – and the impact we can make on our own and our loved ones’ health is tangible. In other words, it’s up to us.

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. Because involving everyone is the fastest way to bring our wait for a cure to an end.

Michael J. Fox is an advocate, author, actor and the founder of the Michael J. Fox Foundation for Parkinson’s Research ( The Parkinson’s Institute in Sunnyvale is one of 18 U.S. sites carrying out the Parkinson’s Progression Markers Initiative (PPMI), a landmark clinical study sponsored by the foundation.