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“I feel like there is hope, great hope, more hope now than ever before.” –Peggy Willocks, Diagnosed 14 years
Recently Diagnosed with Parkinson's Disease?
If you have recently been diagnosed with Parkinson’s disease (PD) understanding the disease, and learning about the resources available to you, are good first steps.
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Participant Perspective: We Share a Responsibility to Participate in Clinical Trials
Nov 05 2007
Next to following a daily exercise regimen, the best thing we can do for ourselves is to participate in clinical trials that we, along with our doctors, determine are appropriate for us. Because there is no cure for Parkinson’s and existing treatments control symptoms for only a limited time, clinical trials are critical to finding improved treatments that help us live well longer with PD. According to the Maryland Parkinson disease and Movement Disorders Center, “People who participate in clinical trials tend to do better than those who do not.”
Achieving our ultimate goal of finding a cure for PD is directly related to recruiting and retaining enough people with Parkinson's disease (PWP) to participate in clinical trials. Yet currently, fewer than 1% of PWP do. This is woefully short of the number that researchers anticipate will be needed over the next two to three years for new trials.
This situation negatively impacts all of us, because finding a cure for Parkinson’s is directly related to recruiting and retaining enough PWP to participate in clinical trials. Each of us has a responsibility to participate — to thank those who came before us, to help fellow “Parkies,” and to spare our children and grandchildren the pain of Parkinson’s.
The Pharmaceutical Research and Manufacturers of America estimates that ONLY five of 5,000 compounds tested on animals make it to human trials—and ONLY one in five of those may reach the market.
“The FDA estimates that getting a drug developed and approved takes about eight and a half years, and only a small minority of participants who start the clinical trial process stay with it through the end.”
Jean and I have both participated in clinical trials, which you can read about on succeeding pages. We’re not asking you to do anything we haven’t done. We’re simply asking you to do your part. Like it or not we, and each of our families, are in this together.
We sink or swim as one. Visit www.PDtrials.org for current information about ongoing clinical trials. New clinical trials are always starting. If you don’t find one today that is a match for you, check back in a month or so.
-Sheryl
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Why aren’t more PWP participating in clinical trials?
In 2005, PDTrials conducted a Harris poll to identify what barriers were keeping PWP from participating in clinical trials. There were some surprising results:
- Nearly all (95%) patients surveyed agreed that clinical trials for Parkinson’s are necessary to find better treatments, yet only 11 percent reported their doctor ever suggested participating in a trial.
- Of those surveyed who were aware of trials, only 11 percent had received information about trials from their doctors.
- About 40% of those surveyed had learned about trials from support groups, and 27% had learned about trials from other PWP.
- Only 14% of primary care physicians, 21% of neurologists, and 18% of PWP surveyed indicated that they were "somewhat" or "very satisfied" with the amount of information available about clinical trials for Parkinson’s disease.
© 2007 Sheryl Jedlinski & Jean Burns
Source Publication: ScienceDaily
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