More than six million people worldwide, including one million in the United States, live with Parkinson’s disease-a chronic, degenerative, neurological disorder that is characterized by symptoms that typically progress from mild tremors to significant physical incapacitation.
Despite modest advances in pharmaceutical and surgical therapies, there is no known cure for Parkinson’s. The best hope for finding one, say experts in the field, is through clinical trials. Therein lies the problem.
Even though almost all (more than 96 percent) of the physicians in the United States who treat people with Parkinson’s disease agree that clinical trials are necessary to find better treatments for the disease, the majority of physicians have never referred a patient to a clinical trial.
These are among the highlights of a recent survey commissioned by Advancing Parkinson’s Therapies (APT), a collaborative effort spearheaded by leading Parkinson’s organizations. The survey also found that, among Parkinson’s patients, 40 percent cite support groups and 27 percent cite other people with the disease as the most common sources of information about clinical trials. Meanwhile, only 11 percent of patients get information from their doctors.
Currently, less than 1 percent of people with Parkinson’s are participating in clinical research. This is far short of the level that researchers anticipate will be needed for clinical studies over the next two to three years, including studies of therapies to slow or stop disease progression and to improve symptoms such as tremors. This disparity may result in severe delays in the availability of new treatments.
Lack of adequate information about clinical trials was identified as a barrier to clinical trial enrollment. Only 14 percent of primary care physicians, 21 percent of neurologists and 18 percent of patients surveyed indicated that they are somewhat or very satisfied with the amount of information available about clinical trials for Parkinson’s disease.
“People are not getting the information they need to make decisions as to whether to participate in a trial,” said Michael J. Fox. “The fewer people that go into trials, the longer it will take to develop new treatments.”.
To meet this challenge, the Parkinson’s community has initiated a new campaign, Advancing Parkinson’s Therapies (APT), to make sure patients and physicians are better informed. The campaign seeks to address information gaps and to provide physicians and patients with information on a variety of clinical trials that are currently enrolling patients.