For more than a decade, members of the iConquerMS community have continued to share what life with MS looks like over time—their health, symptoms, activity, quality of life and more—through REAL MS surveys.
A survey is a snapshot. It can tell researchers how someone is doing at a particular moment: what symptoms they’re experiencing, what treatments they’re using, how active they are, or how MS is affecting their quality of life.
But when people answer those questions again and again over time, something different becomes possible.
Researchers can begin to see what changes, what stays consistent, and what patterns start to emerge over time.
That idea has been at the heart of REAL MS for more than a decade.
Built over time
When iConquerMS launched in late 2014, members were invited to complete four core surveys covering demographics, MS history, overall health, and quality of life.
In 2016, those surveys became the foundation of REAL MS, short for Research Engagement About Life with Multiple Sclerosis. Participants were invited to return twice a year to provide updates, building a longitudinal view of their experiences over time.
Over the years, the program continued to grow. New surveys expanded the kinds of information members could contribute, including physical activity, wellness and diet, disability, and symptoms.
Laura Kolaczkowski, iConquerMS lead patient representative, helped shape iConquerMS from its earliest days and has been a driving force behind REAL MS and its evolution.
“iConquerMS began with a then-novel approach—to gather patient experiences and perspectives on living with MS,” said Kolaczkowski. “We led the way in participant-driven research, and having ten years of my personal data gathered through REAL MS provides me with a clear snapshot of how living with this condition has changed over time. Equally important, it gives researchers a broader view across our community to discover patterns and treatments that can help improve our quality of life.”
What began with individual surveys has become something much larger: a research resource built contribution by contribution, year after year.
Why time matters
The value of longitudinal research isn’t simply having more data. It’s being able to see what happens between those snapshots.
A single survey might tell researchers about someone’s symptoms today. Repeated surveys can help researchers examine how symptoms change, what stays consistent, whether experiences follow particular patterns, and how different aspects of life with MS may relate to one another over time.
That can help researchers explore questions that matter to people living with MS: How are people doing over time? What are they doing to manage their MS? And are there patterns between treatments or lifestyle practices and the symptoms and impacts people experience? Those connections can offer clues about what may be helpful—and for whom.
And the longer people participate, the richer that picture can become. A survey completed today doesn’t replace one completed years ago. It adds another point to a growing record. And when nothing has changed, that matters too. Knowing what stays consistent over time can be just as important to researchers as knowing what changes.
A decade of new questions
The questions researchers can ask of REAL MS aren’t limited to the ones scientists had when the data was first collected. Years later, that data can be revisited with new questions, new perspectives, and new approaches.
Today, approved researchers around the world can access REAL MS through ACP’s secure, cloud-based data platform, allowing them to work with years of participant-reported information while ACP maintains oversight of the resource.
And as the questions evolve, so do the tools researchers can use to answer them.
Advances in artificial intelligence, machine learning and other approaches offer new ways to examine complex datasets and look for patterns that may not have been possible to explore when some REAL MS participants completed their first surveys.
A contribution made years ago increases in value as science advances.
Research that builds on research
There’s another way REAL MS can become more valuable over time. Researchers who use ACP data are required to return their findings to ACP, so what comes out of one study can help inform the research that follows.
That creates a cycle: people contribute information, researchers use it to investigate new questions, and what comes back to ACP can give future researchers more to build on.
ACP’s new Data Challenge Pilot is one of the latest ways REAL MS is being put to work. Two of the three teams participating in the pilot are using REAL MS data for their research, bringing new analytical approaches to a resource built over more than a decade.
Built to grow and evolve
Ten years in, REAL MS isn’t finished. The resource continues to grow with every survey completed, but the surveys themselves can evolve, too.
As health care changes and new priorities emerge in MS research, REAL MS can add new questions to better understand what people are experiencing. For example, questions about GLP-1 medication use were added as these medications became more widely used and increasingly relevant to research.
That adaptability helps keep REAL MS responsive to both the experiences of people affected by MS and the questions researchers are asking.
Every new survey adds another point to a growing longitudinal record. And as REAL MS evolves alongside MS research, contributions made across more than a decade can continue to inform the questions that come next.
REAL MS was built over time. Its value is still growing.
Add your experience to REAL MS
If you’re already part of iConquerMS, keep an eye out for opportunities in December to update your REAL MS surveys.
Not a member? Join more than 11,000 people affected by MS who are contributing their experiences and helping shape MS research.
Join iConquerMS →