Details and Information
Area of Focus: Multiple Sclerosis
Population Characteristics: 70 percent Female
Organization: Accelerated Cure Project for Multiple Sclerosis
Contact: [email protected] or call 844-897-1211
Principal Investigator: Robert McBurney, BSc, PhD
Co-Principal Investigator: Laura Kolaczkowski, BA
The MS-PPRN, iConquerMS™, empowers people affected by multiple sclerosis to become active participants in research that is meaningful and impactful to them. Members of iConquerMS™ come from all 50 United States as well as 22 other countries, and is representative of the diverse nature of this chronic neurologic disease that affects over 2.3 million people worldwide. The MS-PPRN is governed by a majority of people who live with MS, and is supported in key and ancillary ways by major MS advocacy organizations in the US. The expertise of the Accelerated Cure Project in data collection and biological sampling adds to the depth and breadth of research capabilities of this network not only for its own use, but in its collaborative work with other PCORnet PPRNs and CDRNs.
PCORI’s Phase I and Phase II for the MS-PPRN supports the development of iConquerMS™ and its deployment of the patient-directed longitudinal study REAL MS™ (Research Engagement About Life with Multiple Sclerosis). REAL MSTM is designed to answer important questions about the heterogeneity of the experience of MS across the population of people who are living with the disease and about the factors that affect MS progression and treatment outcomes.