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iConquerMS provides patient powered research

By Laura Kolaczkowski

There’s no doubt that having multiple sclerosis can leave me feeling at a loss, wondering what my prognosis might be and what can I do to improve my immediate future. This question has come to me almost every day since my diagnosis in 2008, and has also left me looking for ways to help rather than just sit back and wait for a cure.

A powerful way I have found to help is by being a part of iConquerMS™. It is a patient-led initiative working to change how research is being done, connecting all of us and our MS health information through an online portal. After you register at www.iConquerMS.org, your information is de-identified and put together to create the big picture of MS. This big picture includes all of us, regardless of what type of MS we might have, and what drugs we may or may not take. Age isn’t an issue. Each of us has valuable information to share to make this big picture complete.

The purpose of iConquerMS is to guide research that is meaningful and effective to people affected by MS. Through the online portal we can submit our own thoughts and research ideas. Has a researcher ever asked you what you want to have looked at in depth? Me neither! iConquerMS gives us the opportunity to change that and ask questions important to us.

I am honored to serve as the lead patient representative as well as the chair of the governing board for iConquerMS. Not only do I have MS, so do the majority of people who are driving and shaping this initiative as members of the iConquerMS governance. We also have representatives from MSFocus: the Multiple Sclerosis Foundation and other major MS advocacy organizations who are our partners in this initiative and active members of its governance. This is a cooperative effort and the nonprofit Accelerated Cure Project oversees our work. I could not ask for a more dedicated and trustworthy group of people and organizations to partner with for iConquerMS.

iConquerMS is the only way I know that I can help shape research about questions that are important to me. As a member iConquerMS, I am fueling research. I do this by completing the questionnaires, sharing my ideas about research topics, and providing input on research studies and how they should be designed. I am excited to share that we will begin our first major research project this summer with REAL MS (Research Engagement About Life with MS). I hope you will join iConquerMS and help us tell the world what REAL MS looks like.

Joining is simple – go to www.iconquerms.org/user/register
  • Agree to the informed consent – I know it is lengthy, but we have to collect this consent because we are doing research and need to make sure that’s clear.
  • Complete at your own pace the basic surveys you will find through your personal dashboard. These surveys include basic information about you, your diagnosis and how living with MS affects you today.
  • After you have joined, you can also access the place where you can submit your own research ideas.

Once you join iConquerMS you can expect to receive emails about research ideas and studies that need your input. Finally, as studies are completed there is a commitment to sharing all of the results with the members of the iConquerMS community with the anticipation those findings might be applied to make our lives with MS better. You can make a difference in MS research today by joining at www.iconquerms.org/user/register.

Laura Kolaczkowski, of Beavercreek, Ohio, was diagnosed with MS in 2008. Since that time she has been involved in MS advocacy, particularly through empowering others with MS to participate more in their own health care relationships with providers and researchers. Laura is the lead patient representative and serves as the chair of the governing board for iConquerMS.