In the decade since its inception, iConquerMS has emerged as a beacon of hope and progress in the battle against MS. This groundbreaking initiative has harnessed the power of patient-driven research to unlock new insights into this unpredictable and often debilitating disease. As we continue our series celebrating the 10th anniversary of iConquerMS, our second article delves into the significant strides made in MS research through the collective wisdom and experiences of thousands of patients who’ve joined forces within this innovative platform. Join us as we uncover the remarkable journey of discovery, empowerment, and hope facilitated by this pioneering patient-powered research network!
There’s growing recognition of the importance of including patient and caregiver insights in healthcare decisions and research. People living with conditions like MS have valuable experiences that can inform treatment options and enhance our understanding of chronic diseases. Their contributions can steer research and ensure new medical advancements address the real needs of patients.
Research is the close study of a topic to learn more about it or understand it better. Clinical research aims to discover better ways to detect, diagnose, treat and prevent illnesses. Most research today is led by researchers or scientists who choose what to study, a method called “investigator-driven” research.
There’s a growing trend towards “participant-powered” or “participant-centered” research. In this approach, while a researcher still comes up with the study idea, people who have the disease play a bigger role in planning the research alongside the researcher.
Taking it a step further, in “participant-driven” research (PDR), the research question doesn’t come from a scientist but from someone who has the disease. They then team up with a researcher to jointly create the study.
Research methods powered and driven by participants are transforming the way we source questions, conduct research, and share results. By involving patients as equal partners, we can enhance studies and develop treatments that are safer and better match patient needs and preferences. This approach is increasingly vital for creating sustainable, high-quality and effective healthcare.
Since 2012, the Food and Drug Administration (FDA) has been working to make sure that the experiences and opinions of patients are included in drug development and evaluation through the Patient-Focused Drug Development (PFDD) initiative. This has involved meetings to listen to patients’ views on diseases like chronic pain, autism, and MS, showing a clear desire for them to be involved in the drug development process. In a notable application of this approach, EMD Serono, in collaboration with the iConquerMS community, integrated patient feedback into a clinical trial looking at Evobrutinib in participants with relapsing remitting MS, marking a significant step in involving patients directly in research and development. This partnership, where patients helped design the study and select key elements, has created a new industry benchmark for using patient experiences. It underscores the significance of understanding how diseases and treatments truly affect patients’ lives.
“When it comes to what life with MS is like, I’m an expert. Together we can all get onboard and pull our expertise together… All aboard, not just some, not just a few, but all of us aboard on this journey towards getting drugs approved that are going to improve our lives.” – Laura Kolaczkowski, person with MS and member of the PFDD Council
iConquerMS has revolutionized how research into MS is conducted by directly involving those affected by the disease in the research process. Members actively contribute to study designs and now, through the “Our Questions Have Power” program, can suggest, discuss, and prioritize research topics they believe are important. This initiative ensures that research is not only focused on areas of significant interest to the MS community but is also conducted in a way that fits into their daily lives. High-priority questions identified by the community are then explored in collaboration with researchers, with iConquerMS offering support. Once a study is conducted, its results are shared broadly, making the research process inclusive and directly responsive to the needs and interests of those living with MS.
Participation is easy!
If you’re affected by MS, either personally or as a caregiver, your questions and insights are valuable for guiding research to better understand and treat MS. By joining iConquerMS, you can help direct the focus of MS research by sharing what matters most to you and others in the community.
iConquerMS makes it easy for people to access and understand MS research results. On the Research Projects page, you can find updates and summaries for research that network members have contributed to. This includes projects that are either in progress, open for participation, or already completed with results available for review.
iConquerMS shares MS research findings with the MS community in other ways, too! The Chat with Chat webinar series offers a look into researchers working with iConquerMS, exploring their areas of study and how their work helps people with MS. The ACP newsletter is a way to learn about new MS research discoveries and more! We are excited to partner with RealTalk MS, a weekly podcast that discusses many topics, including groundbreaking MS research.
At the heart of iConquerMS is an innovative approach to research, one that places the power in the hands of those most affected by MS – the participants themselves. By contributing to research that’s not just about them but guided by them, members have a unique opportunity to shape the future of MS care and treatment. This participant-driven research is making strides in understanding MS, pushing boundaries, and uncovering new insights that could lead to breakthroughs in how the disease is managed, treated and, one day, cured. We invite you to be a part of this transformative journey. Join iConquerMS today and help us drive forward research that’s truly by the MS community, for the MS community.
