Patient-led Study, REAL MS, Invites Adults to Help Advance and Direct MS Research

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by Charles Moore |

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iConquerMSlogoAn innovation in multiple sclerosis (MS) research has been launched by the iConquerMS initiative — a longitudinal, prospective study called “REAL MS,” an acronym for “Research Engagement About Life with Multiple Sclerosis,” with a goal of accelerating research into personalized treatments for MS patients.

This type of study collects repeat observations of the same variables, over long periods, from MS patients divided into “cohorts,” or groups with shared characteristics. Patients who agree to take part answer questions about their particular experiences, so that differences across populations can be identified, and about factors affecting their MS progression and treatment outcomes. Biosamples, crucial to data collection and analysis, may also be requested.

Importantly, iConquerMS — an initiative of the Accelerated Cure Project for MS, a research and advocacy non-profit group based in Massachusetts — is designed to empower anyone living with MS to participate in research and, unlike other data-gathering programs, is led by a governing board with a majority of MS patients as members, as are a number of committees.

“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.

“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.”

iConquerMS, funded by the Patient-Centered Outcomes Research Institute (PCORI), is asking MS patients to participate in this key project. (Fluency in English is required for now, but multilingual participation worldwide is a goal.)

iConquerMS connects its members to others living with MS and to the research community. Members can suggest research topics and questions in areas that matter to them, and receive updates on what researchers are learning from collected data. Among the study’s aims are:

  • increasing recognition of the importance of MS patients being at center of decisions regarding their care
  • fully engaging patients in all aspects of research, from the design of studies to the dissemination of results and their impact on care practices
  • optimizing the effectiveness of disease-modifying treatments, a growing area of MS care, through targeted data collection and analysis
  • providing qualified researchers access to the REAL MS dataset, and/or the entire iConquerMS dataset, for ongoing or new research studies
  • providing these researchers access to prospective biosamples collected for genomic and other biochemical analyses

The study, launched in August, uses a strategy similar to the Framingham Heart Study, a community-based health study operating continuously since 1949 that has had a profound impact on understanding of the causes of heart disease, and on how best to treat and prevent it.

REAL MS investigators intend to enroll thousands of 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 invited to apply. Registration is possible by clicking on this link.

“In the big picture, what I hope is that the study enables MS research to be powered by the MS experts — people living with MS,” said Robert McBurney, chief executive officer of the patient-founded Accelerated Cure Project for MS.

“At the simplest level, we are providing a place where people with MS can store their responses to questions about many aspects of their disease, view how their responses compare with the responses of other participants, and can review, print or download those responses to share with their clinicians (and others),” he said.
At more advanced levels, REAL MS is a flagship research program, collecting comprehensive data regarding MS patient demographics, overall health, quality of life, disease symptoms, and treatments twice a year via online questionnaires. Researchers will, from time to time, invite participants to reply to separate surveys on particular topics, and possibly contribute biospecimens.
Its projects, said McBurney, “might address the heterogeneity of the disease and define new subtypes that correlate much more closely with beneficial outcomes to particular treatment strategies — leading to personalized or precision medicine for MS.” Or,  they might help to “discover early signs or molecular signals that make it possible to diagnose and treat people with MS much earlier than currently … [or] use the data to understand what drives the progression on the disease towards severe disability.”
Healthcare, he added, “is moving into an era that is consumer-driven, perhaps one of the last industries to become consumer-driven. It’s appropriate, therefore, that the research that underpins healthcare becomes patient-driven … one of the goals of the iConquerMS initiative is to blur [the distinction between the MS research community and MS patients] or even to strive for the extinction of that distinction.”

Among the study’s primary goals is to accelerate research into personalized MS medicine through a classification of patients into subtypes, based on comprehensive personal characteristics combined with laboratory data. The ability to predict the disease’s likely course based on these subtypes, to provide patients and their physicians with information on likely responses to disease-modifying therapies (DMTs), and to provide evidence for intervention strategies, all represent significant advances toward the goal of being able to arrest, cure, or prevent MS.

Questionnaires that, at least initially, will be given study participants are: MS History, Demographics, Neuro-QoL Adult Short Forms (Quality of Life Assessment), PROMIS Global Health Scale (General Health Assessment), Self-Administered Comorbidity Questionnaire (Other Medical Conditions), and Godin Leisure-Time Exercise Questionnaire (Physical Activity Assessment).

“REAL MS is the first real look at MS as it personally pertains to me and others who live with this disease. … I love knowing that when I see my children and grandchildren, I can say I did my best to help solve the question of MS by being a part of REAL MS,” Kolaczkowski said. “This is a contribution I make that millions of people will benefit from, but especially my own family. I haven’t surrendered to MS.”

For information on how to join iConquerMS and the REAL MS study, visit

Patient-Centered Outcomes Research Institute (PCORI)

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