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Educating and Supporting the Parkinson's Community
By Robin Elliott
In the Fall issue of PDF News & Review, as part of our celebration
of PDF's 50th anniversary in 2007, we described the research dimension
of our three-part mission.
In this issue, we highlight how we fulfill the second part of our mission: providing accurate, accessible information and education on Parkinson's.
We are guided in our efforts by a Medical Policy Subcommittee of top Parkinson's scientists and clinicians, and by a new People with Parkinson's Advisory Council (PPAC), made up of people with Parkinson's and caregivers who lend their invaluable perspective and insight to shape our work.
Parkinson's Information Service (PINS)
At PDF, we understand that people have personal, specific questions that need answers. That is why we take great pride in our Parkinson's Information Service (PINS), a multi-faceted approach to responding to the Parkinson's community's needs and questions.
One of the main features of the service is a US toll-free number, (800) 457-6676, which is available from 10 AM to 5 PM EST. This line is staffed by a team of Parkinson's information specialists, including a licensed clinical social worker, who are trained to answer general questions about Parkinson's disease, its treatments and therapies, research advances and coping strategies. Our staff also maintains referral lists of experienced neurologists and we are often able to direct callers to other resources in their area, such as support groups.
After speaking with an information specialist, callers can request a custom-tailored package of print and audiovisual materials on Parkinson's. The package covers a wide range of topics and can be used as a reference for future questions.
For people who are more comfortable with the Internet, access to our services is available through "Ask the Expert," a section of the PDF website, located at www.pdf.org. Visitors can submit a question or review our archives of frequently-asked questions.
PDF has published and distributed patient-education materials, including this newsletter, since our founding in 1957. In recent years, we have expanded and refined this program.
Among the current products is a video and print package for the newly-diagnosed patient, entitled Diagnosis Parkinson's Disease: You are not alone; an original exercise video, entitled Motivating Moves for People with Parkinson's; and an authoritative brochure on the most helpful web resources for the Parkinson's community. The list also includes updates of existing publications, such as Deep Brain Stimulation for Parkinson's Disease and Parkinson's Disease Q & A, a guide to the most frequently-asked questions about PD.
Before initiating work on a new publication, PDF performs a careful review of needs and collaborates with members of the community to ensure the production of quality materials that meet a specific need. Our efforts have yielded impressive results, spurring a more than 50 percent increase in requests for our educational materials in 2006 compared to 2005 - including many from beyond the US.
The PDF website
One major focus of our efforts to better serve the Parkinson's community has been improving the content and structure of the PDF website (www.pdf.org). With the help of design and website consultants, we have freshened and re-organized our site. The content has been enriched with a detailed section on treatments (including descriptions of Parkinson's medications, possible drug interactions and tips to save money) and a growing series of fact sheets that addresses some of the most pressing issues that people with Parkinson's face.
Visitors can now preview and request print copies of PDF publications from the website, and all of our new materials are available for downloading. As we continue to add to the website and make it even more user-friendly, we are noticing an impressive surge of visitors in 2006: nearly double last year's numbers!
Clinical trial education and awareness
It is estimated that less than one percent of the one million people in the US with Parkinson's disease have ever participated in a clinical trial. This is far short of the number of individuals that researchers anticipate will be needed over the next few years - potentially resulting in severe delays in new treatments.
In response to this concern, PDF launched a community initiative called PDtrials in collaboration with the other national Parkinson's organizations. Accomplishments to date include the creation of www.PDtrials.org, a website in English and Spanish that provides general information on clinical trials and a list of Parkinson's trials that are enrolling volunteers. PDtrials also offers a comprehensive set of educational materials.
One initiative of the project is outreach to general neurologists and other physicians, finding ways to encourage them to refer their patients to trials.
All of these essential services are made possible only because of your support. We are so grateful!
Robin Elliott is Executive Director of the Parkinson's Disease Foundation.