By Lynne P. Taylor, MD, FAAN
Tufts Medical Center
I just read "Outfoxing Parkinson's: Michael J. Fox's Personal, Heroic Quest" in the latest issue of Neurology Now®. Parkinson's disease is a disorder that produces stiff limbs, tremor, and a tendency to fall easily. It is generally diagnosed in the elderly.
Michael J. Fox, however, was diagnosed with "young-onset Parkinson's disease," a less common variant, in 1991 at the age of 30. Despite the best medical treatment possible at the time, which included a variety of medications to help improve dopamine (the chemical lacking in Parkinson's disease), his motor problems progressed, and he underwent a thalamotomy in 1998. A thalamotomy is a neurosurgical procedure in which a tiny, deep area of the brain is destroyed in order to reduce tremor (or shaking) of the limb on the opposite side of the body.
Many patients today are treated with deep brain stimulation instead, which is a similar concept but uses an implantable pacemaker-like device to deliver electrical stimulation to small regions in the brain to block pathways that produce tremor. Because of these advances, he was able to continue acting in a starring role on the TV series Spin City. He subsequently created The Michael J. Fox Foundation (MJFF) in 2000.
The MJFF has been very actively seeking new research ideas to improve quality of life and find better treatments for patients with Parkinson's disease. They review more than 800 grant proposals a year and have promised to move quickly to fund worthy projects.
Trying to develop new treatments, however, has been very costly. Among the most costly aspects associated with research are the resources used trying to match the patients to the trial, and in finding enough people who can participate to make the trial results timely and meaningful.
In response to this hurdle, MJFF recently created the Fox Trial Finder, an online tool designed to match patients, caregivers, and the healthy public to clinical trials for Parkinson's disease. I was able to sign up in just two or three minutes. I was asked to provide some basic information about my birth date, zip code, and whether I had Parkinson's disease, was a caregiver, or was just someone who wanted to help by being a healthy control. Clinical trials generally need patients with the disease who are willing to try the new treatment as well as healthy people (called controls) without the disease, who might participate in other ways.
From my site in Boston I was given two opportunities to participate. The first is a study using two weeks of daily stimulation of the brain with electrical current applied to the scalp followed by a battery of thinking tests. The second study is a biomarker study that does not involve treatment but is "observational" for the next three years and includes brain imaging and collection of blood and spinal fluid for certain chemicals thought to be involved in the progression of Parkinson's disease over time.
I plan to encourage my patients and their caregivers to try out this new service. Clinical trials generally enroll only 5 to 10 percent of eligible people. They are important as it is not possible to advance science or discover new treatments without as much participation as possible. While there are many other sites you can use to look up clinical trials, this one is much more streamlined and straightforward. In the words of the MJFF: "Don't sit still. Are you in?"