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Spreading the Word on Parkinson's Trials

Veronica Todaro

Why is that people with Parkinson's disease participate in clinical trials and studies at a lower rate than people in other disease areas? The PD participation rate hovers at about one percent, compared with more than 60 percent of US children with cancer who participate in clinical trials. Is this because of the passionate feelings evoked by such diseases…or is it something else, such as lack of information among patients and failure of doctors to provide referrals to trials?

To get a better fix on this crucial question - after all, new and better treatments for Parkinson's will come only if more people volunteer for trials - a consortium of national Parkinson's organizations, led by the Parkinson's Disease Foundation (PDF), launched the PDtrials campaign in November 2004. PDtrials is a collaborative initiative dedicated to increasing education and awareness about clinical research by providing information to help people with Parkinson's learn and make informed decisions about participating in clinical trials. Central to this campaign is www.PDtrials.org, a first-of-its-kind online resource for people who are interested in PD clinical studies.

PDtrials: A history

PDtrials was initiated in response to the growing concern within the Parkinson's community about the low levels of awareness and participation in clinical research. The current number of people with Parkinson's who participate in clinical trials and studies is far short of the number of volunteers that researchers anticipate will be needed over the next two to three years for new trials.

A prime example of these new trials is the Neuroprotection Exploratory Trials in Parkinson's Disease (NET-PD), the largest clinical trial of potential Parkinson's treatments ever to be undertaken. Sponsored by the National Institute of Neurological Disorders and Stroke (NINDS) and due to begin this spring, NET-PD will aim to find treatments that will slow the progression of Parkinson's. The enrollment goal is a whopping 2,000 to 3,000 participants. Failure to achieve this goal could mean a delay in finding all-important neuroprotective treatments for Parkinson's disease. This is indicative of the situation that could be faced across the board in Parkinson's research if clinical trial participation does not increase.

To address this looming problem, PDtrials focuses on increasing awareness of Parkinson's trials among patients and families. By increasing awareness in this community - through the website and supporting educational activities among Parkinson's organizations - PDtrials will create more opportunities for the astonishing 80 percent of people who reported in a recent study that they would be likely to participate in a clinical trial if one were available in their area.*

Another key element of this campaign is reaching out to the physicians who treat PD patients - most of whom told our pollsters that they have never referred a patient to a clinical trial. In the upcoming year, PDtrials will forge ahead with our efforts to address this problem by providing physicians with information and materials on clinical trials. We hope to make physicians more aware of the primary role that they can play in helping people with Parkinson's learn about and participate in studies. It is important that they do this, especially early on in treatment, before the patient is using medications that could disqualify him or her from participating in a clinical trial. By targeting both patients and physicians, PDtrials hopes to reduce some of the barriers to participation of people with Parkinson's in clinical trials.

What we have accomplished

PDtrials is off to a very good start. The website - www.PDtrials.org - already boasts a listing of 50 clinical studies seeking participants and attracts over 26,000 visits each month. Close to 2,500 members of the Parkinson's community have signed up to receive monthly email updates about new trials and related news of interest. In addition to these impressive numbers, PDtrials has received praise from people with Parkinson's, caregivers and family members. One caregiver wrote, "My mother has been involved in a study that I found using your website…I am receiving your emails and I looked up all the studies and found her somewhere she would not have to stop taking the medication she is already on. I just thought you should know someone out there not only reads your newsletters but actually follows through and gets involved in the research."

In addition to managing and promoting www.PDtrials.org, the PDtrials campaign continues to engage in "offline" clinical trial education and awareness efforts. These include the widespread distribution of free educational print materials, conference exhibits, speaking engagements, outreach through support groups, collaboration with independent Parkinson's groups and national and local media promotion.

Current and future projects

In early 2006, PDtrials began pilot projects in five areas around the country (Boston, Chicago, the Baltimore/Washington, DC area, San Francisco and New York City). These pilot projects will implement collaborative partnerships with local communities to further increase awareness about clinical research. They will test alternative approaches to the dissemination of information among people with Parkinson's and professionals. To date, meetings in the Chicago area have resulted in the decision to hire a part-time education manager who will focus on increasing physician awareness about clinical trials. In Boston, PDtrials will partner with the Center for Information and Study on Clinical Research Participation (CISCRP) to create a special educational track for the Parkinson's community revolving around CISCRP's Clinical Trial Awareness Day. Stay tuned for information on these initiatives!

PDF's own initiatives

In addition to the work being done through the PDtrials coalition, PDF is taking steps to improve the way that Parkinson's clinical research is conducted. One project will promote dialog among people with Parkinson's, researchers, trial sponsors, government and clinicians through an issues-summit series where we will explore the development of a more patient-centered clinical research model. These discussions will examine the rights and responsibilities of everyone who has a stake in clinical research and explore the creation of a Research Participants' Bill of Rights. Another goal of this program is to encourage greater clinical trial participation among those who are traditionally under-represented in research, such as women and people of color, by funding programs like "POEMS," a research initiative that looks at ways to increase female participation in clinical trials.

PDF also provides funding to the Parkinson Study Group (PSG), a non-profit, cooperative group of Parkinson's disease experts from medical centers in the United States and Canada who are dedicated to improving treatment for people with Parkinson's disease. The grant will help improve PSG's research databases and support the long-term follow-up of research participants.

PDF recognizes the need to think creatively and work collaboratively with all stakeholders in the Parkinson's community. We are encouraged by the success of PDtrials and believe in the power of this inter-organizational program to accelerate treatments and to bring us closer to our ultimate goal of finding a cure for Parkinson's disease.

Veronica Todaro is Director of the PDtrials campaign. This initiative is led by PDF 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. The campaign is advised by the National Institute of Neurological Disorders and Stroke (National Institutes of Health), the Parkinson Study Group, the Parkinson Pipeline Project and the Parkinson's Institute.

*Harris Interactive® survey, June 2005, commissioned by The Michael J. Fox Foundation for Parkinson's Research on behalf of the PDtrials campaign.