2014

Majority of Physicians Who Treat Parkinson's Do Not Refer Patients to Clinical Trials, According to National Survey - Low Awareness Seen as Major Barrier to Clinical Trial Participation



- PD Patients Lack Information but Cite Support Groups as Primary Source

of Data



- Parkinson's Groups Join to Create National Education Campaign and Web

site www.PDtrials.org to Address Issues



    NEW YORK, June 22 /PRNewswire/ -- 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(R) 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 http://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, http://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(R) 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 http://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 http://www.PDtrials.org and the campaign's toll-free number
 (888) 823-8889.
 
     About Parkinson's Disease
     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 complete physical incapacitation. In its final
 stages, Parkinson's may leave people unable to move or speak. Despite modest
 advances in pharmaceutical and surgical therapies, there is no known cure for
 Parkinson's disease.
     To date, The Michael J. Fox Foundation for Parkinson's Research has funded
 or directed more than $50 million in research. For more information on The
 Michael J. Fox Foundation for Parkinson's Research, visit
 http://www.michaeljfox.org.
 
     (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
 
 

SOURCE The Michael J. Fox Foundation for Parkinson's Research

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