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Reflections on PDF's Second Clinical Research Learning Institute
In mid-October, a carefully selected group of 38 people living with Parkinson’s disease (PD) from around the country came to Florham Park, New Jersey to participate in the Parkinson’s Disease Foundation’s (PDF) second Clinical Research Learning Institute.
The three-day program educated participants about the ways in which people living with PD can contribute to the development of new treatments and a cure for PD by becoming advocates within the clinical research process — the stage of science in which potential therapies are tested in humans.
To get a sense of how participants felt about the institute, PDF News & Review spoke with two attendees. One of these, Elke Ballweg, J.D. (EB), was a participant and the other, Claire Henchcliffe, M.D., D.Phil (CH), was a faculty member.
Q: Why did you initially get involved with the Learning Institute? What was your experience with Parkinson’s clinical trials before taking part in the Learning Institute?
EB: When I was first diagnosed with PD a little over two years ago, I was devastated and wanted to hide. I applied to the Learning Institute because I realized that I had a choice to either get involved or continue to feel isolated. I was also particularly interested in this training because of my experience in the medical field. I worked for many years as a registered nurse and once served as a member of a review board for a clinical trial. I have participated in two clinical exercise studies and am presently a participant in the ongoing trial studying the potential of creatine.
CH: I became involved because as a clinical researcher and a doctor, I wanted to both spread the word about the importance of clinical research and hear from people with Parkinson’s. As an investigator, I work on trials studying new treatments for PD, including one right now that is testing Coenzyme Q10. As a practicing movement disorder specialist, I also want to make sure that my own patients get the information they need about clinical studies that interest them.
Q. What was your overall impression of the Learning Institute?
EB: It surpassed my expectations. Although I thought I was well versed in clinical research, I was surprised by how much I learned. I was also impressed with the professionalism and dedication that everyone exhibited.
CH: My reaction was overwhelmingly positive. I felt very privileged to be in such a group of dynamic and dedicated people who each brought their individual perspectives to the table.
Q. What was the most valuable part of the Learning Institute?
EB: The "can do" attitude, from beginning to end, which inspired everyone.
CH: The most valuable part of the learning institute for me was simply having the privilege to participate. The group that attended collectively formed a voice that really needs to be heard.
Q. What was most surprising to you about the Learning Institute?
EB: I was pleasantly surprised by the non-faltering cheerfulness of the group. There was a lot of laughter. I am reminded of the truth of an often repeated saying: "I have Parkinson's, Parkinson's does not have me."
CH: It was eye opening for me to realize that people who live with PD have a “take” on the research process that is often so different from that of the scientists and doctors. I was surprised by how much risk the participants said they would be willing to take within a clinical trial. Sometimes, as doctors, we tend to be overprotective of our patients. Maybe I need to be more aware of my own patients’ attitudes toward clinical research.
Q. What did you gain from interactions with the group — this year’s participants, the faculty members and last year’s graduates?
EB: Among the participants, I primarily valued the camaraderie. I found a new and special family. The faculty impressed upon us the importance of clinical trials and the ways in which we could take a proactive role within the process. And the graduates from last year reminded us that they will be there to help us do this.
CH: The interactions with all parties were made valuable by the unique environment of the Learning Institute, which allowed time for discussion of important issues where all of us were able to interact as peers and colleagues. In my office, there is so little time for this type of interaction.
Q. Has the Learning Institute changed your view of the role that people with Parkinson's can play in clinical research?
EB: Yes, we can be much more proactive. Nobody is in a better position than a person with Parkinson’s to empower another person with PD and to strengthen his or her belief in the role that clinical research can play in finding treatments and a cure for PD.
CH: Absolutely. This experience has expanded the way that I think about the role of the person with PD in research and the insight that he or she has to offer the scientific community. I think there should be much more communication among doctors, researchers and people with PD.
Q. What are your goals upon leaving the Learning Institute?
EB: I would like to take on a more proactive role in the PD community. Since I feel comfortable in a medical environment and with clinical trial information, I would like to be a source of clinical study information for other people who are still wrestling with the implications of the diagnosis and are contemplating participating in clinical research. I’ll start with my local support group, working with one of last year’s Learning Institute graduates.
CH: As a researcher, I will be more vocal within the trials I work on about finding a formal role for people with PD to partner with researchers in thinking about trial design and implementation. As a doctor, the experience has encouraged me to talk about clinical trials with all of my patients. For those who don’t want to participate right now, information about research and potential new therapies can still be valuable.
Q. Is there anything else that our readers should know about?
EB: What struck me was the atmosphere of optimism among our group. While there is no cure for Parkinson’s, there have been improvements made in treatments and there will be even more in the future. But to make those improvements and to ultimately find a cure, we need clinical trials.
CH: I think the Institute made it clear that we — people with PD, doctors, researchers — are all on the same team. We all want to cure Parkinson’s.
Ms. Ballweg lives in Culver City, CA. She practiced law for 30 years in such diverse fields as medical malpractice law, corporate law and insurance defense law. Dr. Henchcliffe is Director of the Parkinson’s and Movement Disorders Institute at Weill Cornell Medical Center in New York, NY.
PDF’s Clinical Research Learning Institute is based on the premise that all too often, the perspectives and experiences of people with Parkinson’s are excluded from the decision-making that advances new therapies. This includes not just participation in trials, but also active roles in advising investigators and industry on clinical trials and educating others about the importance of clinical research.