When Jean Burns was diagnosed with Parkinson’s disease at 51, she was devastated. Her reaction to her diagnosis was to search for ways to fight the disease. By scouring the Internet she was able to find a clinical trial for a new medication that was thought to have the potential to slow or halt progression of Parkinson’s disease. Although the study was eventually halted because the medication was found to be ineffective, Jean was undaunted. “I think researchers can learn so much, even if trials fail,” she said.
Now 64, Jean has participated in about 20 clinical trials, including a gene therapy trial at the National Institutes of Health that involved experimental brain surgery. She decided to participate in that particular study because her disease was progressing rapidly and she was worried about her future. But her commitment to research goes beyond the benefits of accessing new treatments. She has become a patient advocate to promote clinical research because she understands the benefits to both the individual patient as well as the wider community.
The first trial Jean enrolled in led to a follow-up study designed to determine the natural history of Parkinson’s disease. As part of both studies, Jean traveled to Yale from her home in Arizona. Although traveling can be challenging for patients with Parkinson’s disease, Jean found that the Yale team made the experience as pleasant and easy as possible. “Nobody in my experience has ever done what they do at Yale,” she said, noting that the Yale team took care of planning, transportation, meal vouchers, and providing information so that she knew what to expect.
As a veteran clinical trial participant, Jean recommends that those interested in taking part in a study do their own research, ask questions, and discuss their decision with their families. For her, clinical research means giving something back to the community. “You can’t go in thinking you’ll get better,” she said. “You do it for your kids, your grandkids, your neighbors.” There are many clinical trials that are non-interventional, she notes. “There’s no excuse not to do it, because you’ll be helping the community, you’ll be helping your family, you’ll be helping everybody you know.”