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 Tier I project created an infrastructure allowing people with multiple sclerosis to discuss and prioritize research areas of greatest importance and connect with research and medical professionals with whom to collaborate. This is a process of developing a symbiotic relationship, with patients sharing their expertise and lived experience and researchers sharing their expertise and assessment of knowledge gaps. Our Tier II project will support the Patient-Led Multiple Sclerosis Research Community in developing research study ideas to answer patient-selected comparative effectiveness research (CER) questions. This collaborative effort of the Illinois Neurological Institute, Central Illinois MS Council, Center for Outcomes Research, and Department of Medicine at the University of Illinois College of Medicine Peoria has been expanded to include the National Multiple Sclerosis Society and the Exercise Neuroscience Research Laboratory at University of Illinois Urbana Champaign. During Tier II, we will hold quarterly meetings to bring a variety of patients, researchers, and other stakeholders together to build relationships and further develop a patient-led multiple sclerosis research community in central Illinois.

View Tier I Award

Project Information

Carl Asche, PhD, MBA
The Board of Trustees of the University of Illinois

Key Dates

12 months


Award Type
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022