Project Summary
Multiple sclerosis is a rare disease that affects the central nervous system, has a significant impact on health-related quality of life, and places a high financial burden on persons who have the disorder. There are myriad research questions related to the cause(s) of multiple sclerosis, treatments, and how best to support people living with the disorder. Our project creates an infrastructure allowing people with multiple sclerosis to discuss and prioritize research areas of greatest importance, connect with research and medical professionals with whom to collaborate, and develop a PCORI Tier II application to answer a patient-selected research question. This collaborative effort of the Illinois Neurological Institute, Central Illinois MS Council, Center for Outcomes Research, and the Department of Medicine at the University of Illinois College of Medicine Peoria will host a conference-style event to bring a variety of patients, researchers, and other stakeholders together to build relationships and develop a patient-led multiple sclerosis research community in central Illinois. The partnership team will use conference feedback to develop the patient-led multiple sclerosis research infrastructure.