NEWYORK, NY – While almost all (more than 96 percent) of the physicians[i] in the United States who treat people with Parkinson’s agree that clinical trials are necessary to find better treatments for the disease, the majority of physicians have discussed clinical trials with just 10 percent or less of their patients with Parkinson’s disease (65 percent of neurologists and 54 percent of primary care physicians/gerontologists) and have never referred a patient to a clinical trial (53 percent of neurologists and 83 percent of primary care physicians/gerontologists). These are among the highlights of a recent nationwide survey commissioned by The Michael J. Fox Foundation for Parkinson’s Research and conducted by Harris Interactive® on behalf of the Advancing Parkinson’s Therapies (APT) campaign.
Major Findings
The survey found that knowledge and opinions among U.S. Parkinson’s patients[ii] closely mirror those of physicians. Almost all (95 percent) of the patients surveyed agree that clinical trials for Parkinson’s are necessary to find better treatments, yet only 11 percent report that their doctor ever suggested that they participate in a trial. At the same time, those patients surveyed who are aware of trials cite support groups (40 percent) and other people with Parkinson’s disease (27 percent) as the most common sources of information about trials – only 11 percent cite their doctors.
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 who 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 called Advancing Parkinson’s Therapies to make sure patients and physicians are better informed.”
APT Launches Online Clinical Trials Resource
The APT campaign has launched www.PDTrials.org, a major initiative designed to educate people about the importance of clinical trials, explain how clinical trials work and provide a comprehensive, user-friendly, web-based resource to enable patients and caregivers to identify and locate appropriate Parkinson’s disease clinical trials. The campaign seeks to improve patient-physician communication about clinical trials and provides useful information to help patients and their physicians determine whether enrollment in a clinical trial is an appropriate option.
Survey Reveals Challenges
The Harris survey results revealed that in addition to dissatisfaction with the amount of information available, doctors and Parkinson’s patients have reservations about clinical trials. Slightly more than half of physicians (52 percent) agree they would not recommend that a patient enroll in a trial if their disease is well-controlled. And, while 78 percent of patients surveyed indicate that they trust the doctors and scientists who run clinical trials to “do the right thing,” 77 percent believe that if they participate in a clinical trial they may receive a placebo instead of a drug that will help them. In addition, 72 percent expressed concern about continued access to medication once the trial has stopped.
“Most patient concerns can be addressed through specific types of education and information,” said Robin Elliott, Executive Director of the Parkinson’s Disease Foundation, the lead organization of the APT collaboration. “For example, individuals may not know that some trials require no more than completing a family history survey or providing a DNA sample. People must also fully understand the informed consent process and the rights it gives them as trial participants. Advancing Parkinson’s Therapies, through its online resource, www.PDTrials.org, provides valuable information that can help empower all the major stakeholders – patients, caregivers, physicians, researchers and trial sponsors.”
Currently less then one 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 that could offer relief for the nearly one million people in the U.S. who live with Parkinson’s.
About the Survey
Harris Interactive® conducted the survey on behalf of the APT campaign with funding provided by The Michael J. Fox Foundation for Parkinson’s Research, in the United States between January 17, 2005 and March 2, 2005. The physician’s survey was conducted online among 500 physicians on the American Medical Association’s list of physicians who treat patients with Parkinson’s disease; 250 are neurologists and 250 are PCPs/gerontologists. The patient survey was conducted by mail among 518 adults aged 18 and over with Parkinson’s disease. Data from the patient sample were not weighted and are only representative of those patients surveyed. Data from the physicians sample were weighted to the American Medical Association list of doctors with regard to years in practice, gender and region.
In theory, with samples of this size, one could say with 95 percent certainty that the overall results for the physicians sample have a sampling error of plus or minus 5 percentage points and sampling error for the results of neurologists and PCP’s/gerontologists is plus or minus 7 percentage points.
Sampling error for the overall patient’s results is plus or minus 5 percentage points and sampling error for the sub-sample results of patients who are aware of clinical trials (123) is plus or minus 9 percentage points. This online sample was not a probability sample.
Following are some additional highlights from the survey:
- Of neurologists who have ever referred a Parkinson’s patient to a clinical trial, the majority (54 percent) are likely to refer patients within five years of diagnosis.
- Nearly 80 percent of patients surveyed stated that they would be somewhat, very or extremely likely to participate in a clinical trial if one were available in their area.
- Of patients surveyed, 45 percent were diagnosed with Parkinson’s by a neurologist while 37 percent received a diagnosis from their PCP or family practitioner; 64 percent of Parkinson’s patients surveyed are currently under the care of a neurologist and 40 percent see a PCP or family practitioner.
About the Advancing Parkinson’s Therapies (APT) Campaign
Advancing Parkinson’s Therapies (APT) is comprised of the major Parkinson’s patient voluntary groups to accelerate the development of new treatments for Parkinson’s by increasing education and awareness about clinical trials among the Parkinson’s community. APT is led by the Parkinson's Disease Foundation in collaboration with the American Parkinson Disease Association, The Michael J. Fox Foundation for Parkinson’s Research, the National Parkinson Foundation, the Parkinson’s Action Network, The Parkinson Alliance and WE MOVE, and is advised by National Institute of Neurological Disorders and Stroke, the Parkinson Study Group and the Parkinson Pipeline Project. Visitors to www.PDtrials.org can search for a clinical trial by symptom, location, trial type or sponsor and can receive the latest news and views on what's happening in the world of Parkinson's trials. Free educational materials, such as a comprehensive guide to clinical trials, can be ordered through www.PDtrials.org and the campaign’s toll-free number (888) 823-8889.
[i] Physicians defined as neurologists and primary care physicians/gerontologists
[ii] Parkinson’s patient defined as U.S. adults aged 18 and over surveyed who have Parkinson’s disease