“We can’t expect to have great drugs available to patients without early clinical studies. People need to step forward at all stages of research,” says Kathy Louden.
A medical writer in her professional life, Kathy Louden of Illinois has long known the importance of clinical trial participation and the need for volunteers. That’s why, when Kathy read the Dec. 2011/Jan. 2012 issue of Neurology Now featuring Michael J. Fox and the work of the Foundation, the mention of clinical trials matching tool Fox Trial Finder stuck with her.
Kathy’s husband had recently received a possible diagnosis of progressive supranuclear palsy (PSP), a degenerative and atypical parkinsonian movement disorder affecting voluntary muscles. Kathy visited www.foxtrialfinder.org and searched for PSP. “We found what we were looking for,” says Kathy. The study Kathy found consisted of a one-time visit to the clinic and a phone interview.
Though she had wanted to volunteer, Kathy was ineligible to participate in the study as a control because of her age. However, her husband was eligible and agreed to participate as a patient. Kathy says, “I was so impressed by the clinician and by how thoroughly my husband was examined. The doctors not only took care of my husband, but talked to me about how hard diseases like PSP can be on the family and caregivers of patients.”
Participating in the trial gave both Kathy and her husband reassurance that they hadn’t found anywhere else. Kathy’s husband had been initially misdiagnosed with an auto-immune disorder before his neurologist suggested that his symptoms were signs of PSP. Participating in the study they found through Fox Trial Finder confirmed the diagnosis. “To have that peace of mind of knowing what’s wrong with him, that alone was worth participating. We would definitely participate in another clinical trial given our positive experience; the researchers were so grateful for our participation and took good care of us.”
For Kathy Louden and her husband, the benefits of participating in clinical research included “knowing that many studies of PD and uncommon diseases like PSP can’t recruit enough volunteers to gain statistical relevance.” Kathy’s husband was “able to help produce answers, help elucidate why people get diseases like PSP and Parkinson’s disease – and that’s doing something for the greater good.”
Sign up today at www.foxtrialfinder.org to find out how you can help drive clinical research.