“We see it as the first-ever opportunity for active involvement of participants in determining which research questions will be studied and how research protocols are designed. ![]() “Those of us living with multiple sclerosis are very excited by the launch of the REAL MS™ study,” noted Laura Kolaczkowski, Lead Patient Representative and Co-Principal Investigator of iConquerMS™. "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. “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,” Dr. “The time is absolutely right to bring personalized medicine to the field of MS,” said Robert McBurney, Ph.D., President and CEO of the Accelerated Cure Project for MS and Co-Principal Investigator for iConquerMS™.Ĭurrent MS subtypes (relapsing and progressive) are broadly defined based on the presence or absence of disease relapses. Participation of a diverse population of those living with MS to provide their ideas on research conducted with their information, and a commitment on the part of the iConquerMS™ leadership to promptly and openly share research findings are important aspects of the REAL MS™ study. REAL MS™ emphasizes identification of personal characteristics and environmental factors that may interact with genetic predispositions to influence outcomes and the discovery of molecular biomarkers of the disease through genomic and other biochemical profiling. REAL MS™ is modeled on the Framingham Heart Study, a longitudinal community-based research study which has had a profound impact on the understanding of the causes of heart disease and how to treat and prevent it. REAL MS™ ( Research Engagement About Life with Multiple Sclerosis) will encompass a diverse population of thousands of individuals living with MS, who will participate by answering online questionnaires about their disease experience and by providing biosamples for molecular analysis. WALTHAM, MA, Septem– iConquerMS™ ( a research initiative of the Accelerated Cure Project for Multiple Sclerosis, today launches REAL MS™, a prospective longitudinal study of multiple sclerosis intended to answer important questions about the heterogeneity of the experience of MS across the population of people living with the disease and identify ways to personalize clinical care by identifying factors that affect progression and treatment outcomes. “The rapid growth of patient-reported outcomes in clinical research is important progress not only for people living with MS, but for organizations seeking to develop and deliver new therapies to the market that make a real difference in the lives of patients,” said Robert McBurney, PhD, president and CEO of ACP and co-principal investigator for iConquerMS. “We are delighted to partner with EMD Serono to break silos of information and advance the engagement of patients across the entirety of the clinical research process.REAL MS™ Will Explore Causes and Factors that Affect Progression and Treatment Outcomes Through workshops, focus groups, document reviews and surveys, iConquerMS participants will provide input across all stages of the study. Team members from EMD Serono and iConquer will work together to design endpoints of clinical trials as well as define measures and the relative importance of treatment benefits. “Those of us living with multiple sclerosis have the most valuable understanding of what matters most when it comes to treatment of this condition,” Laura Kolaczkowski, lead patient representative and co-principal investigator of iConquerMS, said in a press release. She called the collaboration “an important opportunity for our collective voices and insights to be heard and to drive real progress in research, drug development, and ultimately in the fight against MS.”
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