By Deborah Backus, PT, Ph.D.
Director of Multiple Sclerosis Research, Shepherd Center
Have you ever heard about a research study and thought that although the research pertains to MS, it has nothing at all to do with what you think people with MS need? Or have you heard the phrase “Experts say that people with MS…”, or something similar, and wondered who are these “experts”, and how do they know as much as I, the person with MS, knows about the experience of MS? Now, can you imagine taking your thoughts and your ideas about what you need or want to know about MS, treatments, rehabilitation options, and turning these into research questions? Can you conceive of influencing the questions that researchers ask about MS?
The creators of iConquerMS™ did. Part of a national research network, called PCORnet, iConquerMS™ is a unique research initiative that is driven by and governed by people with MS. That means people with MS “call the shots”. The collaborative partnerships created by iConquerMS™ between people with MS, researchers, and healthcare providers will help define the most meaningful research questions and the best ways to answer them to improve the care of people with MS.
How does it work? IConquerMS™ is accessible through the iConquerMS.org website/portal. At this portal, people with MS can securely submit their health data, for the collection of large amounts of data from multiple people with MS. This data can be used by researchers to look deeper into issues related to MS, to find patterns and connections across the group that might not be evident in a single individual, or across smaller groups. This big data research in MS may help answer questions related to what is important to people with MS, the causes of MS and the strategies that might prevent it, cure it, or stop progression of disability, and which treatments work best in different individuals.
As a person living with MS, your information has power. Because your experience with MS is unique, your data is imperative for learning more about the progression of MS and the treatments that are most effective in stopping progression of disability, alleviating the symptoms of MS, and improving your quality of life.
What do you get from participating in iConquerMS™? As a registered user of iConquerMS™ you not only privately enter your data, but you will be able to interact with other people living with MS and the researchers hoping to beat MS. iConquerMS™ will also provide updates on how the data is being used and keep you informed about the insights emerging from the research. You will be on the frontline of research that will more likely make a different in your life.
Go to iConquerMS.org. Help iConquerMS™ researchers solve the problems most meaningful to you.
About Dr. Debbie
Deborah Backus, PT, PhD is Director of Multiple Sclerosis Research at the Shepherd Center in Atlanta, Georgia. Dr. Debbie received her B.S. in Physical Therapy in 1986, and her Ph.D. in neuroscience in 2004.