Peter and Vicky DiBiaso have both been professionally involved in clinical research for more than two decades. But their commitment took on new meaning in May 2015 when Peter was diagnosed with Parkinson’s disease.
Peter was only 47 when he first noticed a resting tremor in his right hand. Not long after, he felt stiffness in his right ankle. A marathoner and avid triathlete, he initially attributed the stiffness to overtraining, but when his symptoms persisted, he suspected the problem might be something more serious. He consulted a neurologist and was referred to a movement disorder specialist who made the diagnosis.
There is currently no cure for Parkinson’s, a chronic, degenerative neurological disorder. Peter’s doctor prescribed a medication to help manage his hand tremor. In addition, he recommended vigorous exercise, which research shows may slow the disease’s progression.
While those measures have helped, as industry professionals Peter and Vicky know that clinical research is essential to understanding and developing treatments for Parkinson’s and many other diseases. They also know that too often promising research that could result in life-changing new therapies is delayed or abandoned due to lack of volunteer participants. Following Peter’s diagnosis the DiBiasos turned to the Michael J. Fox Foundation for Parkinson’s Research to help them identify research opportunities.
Registering with the foundation’s trial matching tool has enabled Peter and Vicky to learn about studies for which they are candidates that are either online or near their Boston home. To date the couple has participated in two on-going observational studies both of which track a large, diverse cohort of people with Parkinson’s and age-matched control volunteers so researchers can better understand the disease’s progression.
In October 2017 the DiBiasos also participated in a biomarker study. In that study, researchers used a hollow needle to withdraw spinal fluid, which they are studying for potential genetic markers and differences that may exist between people with Parkinson’s and healthy control subjects. Researchers hope to use that information to develop future tailored treatments for Parkinson’s.
Vicky has participated in the same observational and biomarker studies as a healthy control subject.
“As a spouse you think, ‘What can I do other than be supportive?’ A lot of times people don’t understand that there is a role for healthy participants in clinical research,” she says.
Nor is supporting clinical research limited to trial participation. Peter and Vicky have twice run the New York City Marathon to raise funds and awareness for Parkinson’s research, and this year will climb Mt. Kilimanjaro for the same reason. As part of their Team Fox fund raising efforts, they also co-hosted a series of charity spin classes with CISCRP in Boston on March 3, to help raise clinical trial awareness.
In addition to helping researchers make headway against the disease, supporting clinical research is empowering Peter says.
“There are so many things that are out of our control, but our ability to make a difference helps our resolve,” he says.
For the DiBiasos, that’s the key takeaway.
“Get involved,” Peter advises.” There are things you can do. You may not be able to change the course of the disease, but you can contribute. I might not be able to find a cure, but I’ll be part of the effort to find one. If everybody participated in just one study we could reduce the development pipeline by years and increase our understanding by leaps and bounds.”
CISCRP provides a variety of opportunities to get involved in clinical research outreach and awareness. These include participating in our Speaker’s Bureau, volunteering on our Editorial Panels and Patient Advisory Boards, sponsoring the development of new clinical research educational materials, and getting involved in our AWARE for All health events and Medical Hero Appreciation 5K Walk/Runs held in cities all over the world. To learn more about these opportunities and to get involved, contact Rachel Minnick, email@example.com
By: Shelly Reese