"My data has power! As someone who earns a living by crunching numbers and lives with multiple sclerosis, I am so excited about this groundbreaking project - a collaboration between people with MS, researchers, and doctors. I invite you to join iConquerMS™ today as we put those who live with MS at the forefront, analyze health data, and work toward finding that cure for multiple sclerosis."
Christie Germans, [field_title], and Someone Living with MS
“When I was diagnosed with MS in 2006 at the age of 37, I made a commitment to meet the challenges of this disease head-on. I started ActiveMSers.org that same year to motivate and inspire those with MS to stay as active as possible regardless of disability. iConquerMS™ shares that passion, that moxie, that unrelenting determination to conquer multiple sclerosis. Don’t underestimate all that we can achieve together through this critical initiative.”
Dave Bexfield, [field_title], ActiveMSers.org
“iConquerMS™ will aid in research of multiple sclerosis, empower patients in making treatment decisions, and influence the goals of future MS research.”
Deborah Backus, P.T., Ph.D., [field_title], Shepherd Center
“In my 15+ years leading investigations into environmental and genetic risk factors for MS, I have been fortunate to work with data and samples from a number of sources, such as the Nurses’ Health Studies, the Department of Defense Serum Repository, the BENEFIT trial, and the Accelerated Cure Project Repository. Large-scale, carefully constructed resources such as these are essential contributors to research. In my opinion, iConquerMS™ represents another significant addition to the research landscape and I enthusiastically welcome its creation.”
Alberto Ascherio, M.D., Dr.P.H., [field_title], Harvard Medical School
“A substantial number of important questions concerning the diagnosis and treatment of MS could be addressed by iConquerMS™. We are very committed to this effort to create an open-access biorepository and database to enable the acceleration of MS research worldwide.”
Arun Venkatesan, M.D., Ph.D., [field_title], Johns Hopkins University School of Medicine
“The plan for iConquerMS™ contains exciting elements that will bring together patients in significant numbers to build credible data for meaningful research. Working together, patients, clinicians, and researchers can significantly advance our understanding and treatment of this condition. My colleagues and I at the UTSW Clinical Center for MS are very pleased to offer our unequivocal support for this initiative.”
Benjamin M. Greenberg, M.D., M.H.S., [field_title], University of Texas Southwestern Medical Center
“Having worked in the MS field of patient advocacy for almost two decades, I am genuinely delighted to have this pioneering opportunity to provide leadership for this new and innovative MS Patient-Powered Research Network. I encourage everyone in the MS world to learn more about this exciting opportunity which has such great potential to improve MS learnings and lives in the days ahead.”
Douglas G. Franklin, [field_title], Multiple Sclerosis Association of America
“The Personalized Medicine Coalition is extremely pleased by the development of iConquerMS™. We believe such programs comprise a major cornerstone for a new medical era in which broad-based patient engagement that recognizes individual variation and productive usage of data will lead to faster discoveries and improved care for patients.”
Edward Abrahams, Ph.D., [field_title], Personalized Medicine Coalition
"With iConquerMS™ in place, people with MS will be able to participate in research that will be meaningful to them in a personal way, due to their contributions in the process. Gathering the observations and experiences of this large number of MS patients into one location will be welcomed by researchers, such as those at GNS Healthcare, who can only benefit from this large-scale compilation of patient-contributed data."
Iya Khalil, [field_title], GNS Healthcare
“Knowledge is power! The ability to make evidence-based decisions is transformative. The iConquerMS™ community is contributing information to drive this transformation. The iConquerMS™ initiative provides patients with tools to tap into the tremendous body of information unique to them and their experience, information which is largely absent in biomedical research and healthcare today. iConquerMS™ empowers MS patients to create an information “whole” that is more than the “sum of its parts” – information on their health experiences joined with traditional health records that they capture and share. This critical patient-centered information provides an important missing piece to the evidence puzzle.”
Ken Buetow, Ph.D., [field_title], Arizona State
“This is our chance for meaningful change – thanks to iConquerMS™ we can stop saying no one listens to the people living with MS, and contribute our ideas and health data to make a difference. I want researchers to know about me and my life; my data – and yours – hold the clues that will unlock the mysteries of multiple sclerosis. Getting involved is easy and I invite you to join me as iConquerMS™.”
Laura Kolaczkowski, [field_title], Lead Patient Representative
"Living with MS is an individual experience, but when many individuals come together to share ideas and information, the collective knowledge gained can improve lives. The iConquerMS™ patient-powered network puts those living with MS at the center of collaboration, alongside scholars, advocates, healthcare providers, and organizations, to increase the scientific knowledge-base regarding the impact of MS. Please join me and the iConquerMS™ community as we work together to make a real difference and conquer multiple sclerosis."
Lisa Emrich, [field_title], Patient Advocate and Blogger
“MS is a highly heterogeneous set of disorders and we do not yet understand all the factors that contribute to or exacerbate the disease. Nor do we fully comprehend the impact the disease has on the individual. A patient-powered research network can provide access to a broad spectrum of patients and harness the insights they have to their own disease. This insight is an essential, as yet missing, element of the scientific research enterprise. With advances in mobile and Internet technologies, the time is right to engage patients directly through a sophisticated and sensitive IT-based solution.”
Magali Haas, M.D., Ph.D., [field_title], Orion Bionetworks
“We’re living in a time of terrific opportunity for improving biomedical research and healthcare. There are emerging genomic technologies; digital tools that collect and give us back information at our fingertips; and a robust national dialogue about patient-centered, personalized healthcare. As a result, it’s the perfect moment for the iConquerMS™ initiative to put those with MS at the center of research. I believe iConquerMS™ can change the landscape of MS, as well as serve as a model for patient-driven data collection and analysis efforts that bring insights and knowledge to improve all our lives.”
Marcia Kean, [field_title], Feinstein Kean Healthcare
"Creating a national network such as iConquerMS™ to amass and manage longitudinal patient and provider outcomes data will significantly expedite the validation process and the time to market for innovative products that improve the quality of care. It allows institutions and companies to work together to integrate patient, provider, and research information. Without the iConquerMS™ approach, it would not be commercially feasible or affordable for an early-stage biomarker company such as MSDx to undertake this approach to data collection."
Marie Wesselhoft, [field_title], MSDx, Inc.
“The iConquerMS™ research plan addresses ways to bridge the information needs of patients and researchers. This new method for developing a research network will capture the imagination and enthusiasm of many of the 4,000 people with MS seen at our Center. The ability to contribute to this new type of research network will not only empower my patients, but also provide researchers with a unique perspective to the self-identified needs of people living with chronic disease.”
Michael K. Racke, [field_title], Wexner Medical Center at The Ohio State University
“I am delighted to lead the highly dedicated and diverse team that is building the iConquerMS™ initiative, putting people with MS at the center of MS research. This initiative is the most exciting research effort I have participated in, or even heard about, in my 40-year career. I heartily applaud the innovative vision of PCORI for a national patient-centered clinical research network – a tiger team has been unleashed on clinical research! We are invigorated by the enthusiastic support for iConquerMS™ from people with MS across the United States. Empowering people with MS to be involved in every aspect of research – especially to address questions that matter most to them – is the surest way to rapidly advance our understanding of MS, to generate better, personalized treatment strategies and, ultimately, to cure this devastating disorder.”
Robert McBurney, Ph.D., [field_title], Accelerated Cure Project for MS
“Understanding the MS experience from the patient’s perspective is vital to improving the care of people with MS and to creating effective treatment paradigms. iConquerMS™ is a ground-breaking initiative that will help to drive research to end MS forever.”
Timothy Coetzee, Ph.D., [field_title], National Multiple Sclerosis Society
