![]() ![]() Four PPRNs focused on autoimmune and immune-mediated conditions formed the Autoimmune Research Collaborative: ArthritisPower (rheumatoid arthritis, spondyloarthritis, and other rheumatic and musculoskeletal diseases), IBD Partners (inflammatory bowel disease), iConquerMS (multiple sclerosis), and the Vasculitis PPRN (vasculitis). Patient-Powered Research Networks gather and utilize real-world data and patient-reported outcomes to conduct comparative effectiveness, safety, and other research, and leverage the Internet to accomplish this effectively and efficiently. Patient-Powered Research Networks collect information directly from patients to conduct and disseminate the results of patient-centered/powered research that helps patients make more informed decisions about their healthcare. More information about iConquerMS is also available on its website, and on its Facebook page.Patient-Powered Research Networks (PPRNs) are US-based registry infrastructures co-created by advocacy groups, patient research partners, academic investigators, and other healthcare stakeholders. The Accelerated Cure Project for Multiple Sclerosis is a patient-founded national non-profit organization dedicated to accelerating work toward a cure for MS. “REAL MS encourages us to expand our research activities outside of the highly selected, artificial setting of MS clinics, and will develop a platform capable of rigorously answering many of pressing scientific and health related concerns shared by both people with MS and their providers,” said Rip Kinkel, MD, Professor of Neurosciences and Director of the Multiple Sclerosis Program at UC San Diego Health. These researchers will also be able to, via iConquerMS, conduct special data collection for specific studies, to collect biosamples and perform genomic and other biochemical analyses, and to possibly gain access to individuals with specific characteristics related to their studies or clinical trials of targeted MS treatments. The REAL MS dataset will be shared with qualified investigators for studies about MS causes and progression. “The study could also provide people with MS and their physicians with new information on their likely response to particular disease-modifying therapeutics, and facilitate interventions early with treatment strategies to arrest, cure or prevent MS.” “REAL MS may accelerate personalized approaches to MS by making it possible to classify individuals into new subtypes based on comprehensive personal characteristics and laboratory data, and then to enable prediction of the likely course of disease based on such subtypes,” McBurney added. “The time is absolutely right to bring personalized medicine to the field of MS,” Robert McBurney, PhD, president and CEO of the Accelerated Cure Project for MS and co-principal Investigator for iConquerMS, in a said press release. Important aspects of the study are the involvement of a varied population of MS patients, providing their opinions on MS research, their own disease characteristics and other information, and the iConquerMS’s commitment to sharing study results with researchers in the field. “We know about the importance of Big Data, and through REAL MS we can create this big picture.” “The power of so many of us coming together to share our experiences with MS in a way that can be measured and used by researchers can’t be overstated,” she added. ![]() REAL MS is the first time that the participants are shaping the research, and we may even unlock the answers to the cure,” Laura Kolaczkowski, a journalist, Multiple Sclerosis News Today columnist, and a REAL MS lead patient investigator, told Multiple Sclerosis News Today in a recent article. “There have been other studies that use a cohort of people with MS over a long period of time, but those studies ask questions that researchers think of and not necessarily what people like me living with MS want to know more about. It also aims to identify ways of providing more personalized care by pinpointing factors that most affect disease progression and treatment outcomes. REAL MS (Research Engagement About Life with Multiple Sclerosis) is a longitudinal research study, designed partly by MS patients themselves, intending to answer critical questions about individual experiences of living with MS from among a large and heterogeneous group of patients.
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