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Peoria event focuses on developing patient-led research to treat multiple sclerosis

More than 1,000 area residents recently received an invitation to an event that could become a defining moment in efforts to make Peoria a nationally recognized center for treatment and research of multiple sclerosis.

Organizers expect about 100 people to attend the day-long MS Research Community Meeting Sept. 19 at Embassy Suites in East Peoria. The registration deadline is Sept. 11.

People with MS and their relatives or caregivers received the invitations. They’ll spend the day with local doctors and medical researchers. More significantly, the researchers want to spend the day with them to learn what they think is important to research.

“The meeting is the beginning of ongoing efforts to have the patients lead us,” said Bonnie Paris of the University of Illinois College of Medicine at Peoria, a co-leader on the project.

“In the past, researchers have come up with the questions, then found the subjects. Now it’s the patients coming up with the questions for researchers to answer.”

People with MS are eligible for a $50 stipend for participating.

Developing patient-led research on MS is a joint effort involving the Center for Outcomes Research at the UICOMP, the Illinois Neurological Institute MS Clinic, and the Central Illinois MS Council.

The meeting is funded, in part, by a small grant from Patient-Centered Outcomes Research Institute, or PCORI, a lesser-known aspect of the Affordable Care Act designed to fund patient-centered research on which medical treatments work best.

The Peoria-based project is the only PCORI grant funded for MS research, according to Carl V. Asche, another project co-leader, who is director of UICOMP’s Center for Outcomes Research.

Though there is no cure for MS, a disease of the central nervous system, certain medications can reduce relapse rates and the effects of symptoms, such as numbness and tremors.

Asche is already involved in developing a database of demographics, treatments and outcomes of each MS patient treated locally. The community meeting, subsequent feedback from patients, and the database sets the stage for larger research grants, he said.

The idea of creating a nationally recognized center for MS treatment and research in Peoria began more than a decade ago, after the Central Illinois MS Council broke off from a national MS organization to focus.

“Since then, we’ve developed a vision to become one of the best MS centers in the country,” said Larry Wallden, who has MS and serves on the local MS council.

Story Source: The above story is based on materials provided by JOURNALSTAR
Note: Materials may be edited for content and length

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