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. It also aims to identify ways of providing more personalized care by pinpointing factors that most affect disease progression and treatment outcomes.
“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. 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.
“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. “We know about the importance of Big Data, and through REAL MS we can create this big picture.”
REAL MS investigators intend to enroll many more people for an accurate representation of the entire MS population. All adult MS patients, 21 years or older, who register for iConquerMS are eligible to participate in the REAL MS study, and are invited to apply. Registration is possible by clicking on this link.
Participants will be asked to complete online questionnaires about their experiences and, possibly, to provide biosamples for molecular analyses. Its design drew on the Framingham Heart Study, a prospective research project conducted in the community that has offered important insights on the causes of heart disease, and how to prevent and treat it.
The study will focus on identifying environmental factors and individual characteristics that may interact with genetic susceptibilities, ultimately influencing disease outcomes. Another goal is to discover new MS biomarkers through genomic and other biochemical profiling.
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.
“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.
“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 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.”
The REAL MS dataset will be shared with qualified investigators for studies about MS causes and progression. 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.
“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 Accelerated Cure Project for Multiple Sclerosis is a patient-founded national non-profit organization dedicated to accelerating work toward a cure for MS. More information about iConquerMS is also available on its website, and on its Facebook page.