REAL MS™ Will Explore Causes and Factors that Affect Progression and Treatment Outcomes
WALTHAM, MA, September 12, 2016 – iConquerMS™ (www.iConquerMS.org), 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. 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.
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™ 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. 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.
“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™.
Current MS subtypes (relapsing and progressive) are broadly defined based on the presence or absence of disease relapses. “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. McBurney added. “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 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.
“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™. “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 who live with MS now have a voice in research, and if as a result, new knowledge emerges to guide our treatment choices based on individual characteristics, the impact will be tremendous.”
Qualified researchers will be able to access the REAL MS™ dataset for their ongoing or new studies about causes and progression of MS. They will also have the opportunity to conduct special data collection activities via iConquerMSTM for specific research studies; to collect biosamples and conduct genomic and other biochemical analyses; and to seek individuals with certain characteristics for their research studies or clinical trials of targeted treatments.
iConquerMS™ (www.iConquerMS.org) is a research initiative by and for individuals living with MS who contribute their ideas and their health data. iConquerMS™ was established in 2014 by the Accelerated Cure Project for MS, a non-profit organization with proven experience sharing resources with MS researchers worldwide, in partnership with Feinstein Kean Healthcare (www.fkhealth.com) and Arizona State University. Funding for iConquerMS™ has been largely provided by the Patient-Centered Outcomes Research Institute (PCORI) (www.PCORI.org). Approximately 3,000 individuals living with MS are currently registered as iConquerMS™ research participants, constituting a large and growing cohort for data-driven research into topics of interest for people living with MS. iConquerMS™ is open to research collaborations with U.S. and international academic, government and industry organizations.
About Accelerated Cure Project for MS (ACP)
ACP (www.acceleratedcure.org) is a patient-founded non-profit organization dedicated to accelerating research efforts to improve diagnoses, optimize treatment outcomes, and develop cures for MS. The organization promotes scientific collaboration and accelerates research by rapidly and cost-effectively providing researchers with the resources they need to explore novel research ideas that can lead to better care for people living with MS.
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Feinstein Kean Healthcare
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Accelerated Cure Project for MS