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Join me: iConquerMS!

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  • Join me: iConquerMS!

    iConquerMS recently met its recruitment deadline to receive critical future funding. Join today and be part of finding a cure for MS. - Dave


    A new nonprofit, patient-driven project called iConquerMS needs a gaggle of MSers (i.e., tens of thousands) to complete a survey about their MS history. And I’m asking you to join me. How can one little survey help? By itself, it won’t do much. But together, the web of our collective experiences will help illuminate crucial patterns and connections, allowing researchers to better piece together the mystery behind MS. Perhaps it will lead to the aha moment as to what causes the disease (and to strategies that might prevent it, cure it, or arrest its progression). Maybe it will help fine tune what treatments work best in which individuals or what factors affect the progression of the disease.

    Together we can conquer this disease. The possibilities are limitless. So let’s do this:

    By taking part in this initiative, which is supported by many of the brightest minds in the MS community (and, as I support this as well, one of the goofier minds), you will be making a better future for all of us with MS. Thank you. I appreciate it more than you can imagine. More details are below.



    About iConquerMS™
    iConquerMS™ is a novel way to fight multiple sclerosis, empowering people living with MS to securely contribute their health data and ideas to advance research. iConquerMS™ is part of a national research network, called PCORnet, that will enable collaborative partnerships to improve healthcare and advance medical knowledge in ways never before possible in the United States.

    iConquerMS™ empowers people living with multiple sclerosis (MS) to participate in research. It is different from other MS data-collection initiatives in several ways. It is:
    • A nonprofit endeavor governed and driven by people living with MS.
    • An opportunity for people living with MS to drive research on topics of interest to them.
    • A bridge connecting people with MS to the research community.
    • Part of a national enterprise called PCORnet that links patients and researchers nationwide.

    The portal is the online home for all information about the initiative, and the gathering place for thousands of individuals living with MS.

    iConquerMS™ is an initiative by and for individuals living with MS who understand the need to contribute their ideas and their health data to fuel research. iConquerMS™ was established in 2014 as a partnership between the Accelerated Cure Project for MS, a nonprofit organization with proven experience sharing resources with MS researchers worldwide; Feinstein Kean Healthcare; and Arizona State University. Funding for the first component of iConquerMS™, called the MS Patient-Powered Research Network (MS-PPRN), has been provided by the Patient-Centered Outcomes Research Institute (PCORI). iConquerMS™ is part of PCORI’s national clinical research network, PCORnet.

    Health Data and Research In the new generation of biomedical research, it’s increasingly important to have active participation of people contributing their health data and experiences, and posing research questions of importance to them. Large collections of electronic data assembled from many individuals and sources (called ‘Big Data’) can enable insights never before possible on a wide variety of topics, such as symptoms, treatments, and quality of life. The health data collected at will be shared with researchers, as will the questions posed by those living with MS. Research questions that may be addressed include what causes the disease and what strategies might prevent it, cure it, or slow its progression; which treatments work best in which individuals; what factors affect the progression of the disease; and what insights can be found to enable new and more effective treatments to be developed.

    How it Works
    Those living with MS, as well as their friends and loved ones, are invited to visit For those interested in participating, there is a registration process that includes agreeing to informed consent. Once registered, participants can work at a secure, password-protected section of the portal to fill in validated research surveys and share Electronic Health Records obtained from their health providers. Feedback of all kind is welcome, as well as research questions to be conveyed directly to the research community. From time to time, participants will be alerted to new surveys, and research updates and progress reports will be shared.

    Authorized researchers can work with iConquerMS™ to submit queries, both within this initiative and across all of PCORnet. Researchers may be part of PCORnet; with government agencies such as NIH; with academic institutions; or with pharmaceutical organizations.

    • 20,000 participants living with MS, contributing their health data and posing research questions
    • Diversity of participants, from all parts of the country, all backgrounds and ethnic groups, and of all ages and stages of living with MS
    • Accelerated and enhanced research studies in MS
    • A working model of a patient-driven data-collection system for use with other diseases
    Dave Bexfield

  • #2
    You got it , Captain!
    Be thankful. Dream Big. Never Give Up.


    • #3
      iConquerMS and NARCOMS

      I’ve had some questions as to how this is different from the NARCOMS survey. Lisa Emrich, who is on the Communications Committee for iConquerMS, explains it better than I can, and she has been involved from the start. - Dave

      This is a question I asked shortly after learning about the iConquerMS initiative myself. Basically, iConquerMS is different in that it is a patient-driven, patient-centered, patient-powered research network. From the initial concept of the project, to members of the Governing Board and Committees, to the participants who will contribute their ideas, experience and data, patients have been and will continue to be involved at every step of the way.

      NARCOMS (National American Research Committee on Multiple Sclerosis) was established by the Consortium of MS Centers as a traditional patient registry which collects data every 6 months. At times, participants in NARCOMS may be selected based on demographics or disease/treatment history to participate in specific research studies sponsored by various companies or organizations who provide services or products to MS patients. At iConquerMS™, registered patients will complete research surveys, but will also be able to contribute data that has not been part of NARCOMS-type studies previously, such as that captured by Electronic Health Records (EHRs).

      The most exciting part of iConquerMS™, I believe, is that participants will also be able to submit their own suggestions for future research studies and will collaborate with the scientific community to bring our research questions to life. With iConquerMS™, the patient/participant has a significant voice in determining what is important and will be actively involved in the development of studies that are implemented within this MS Patient-Powered Research Network (MS-PPRN).
      It would be a great idea for MS patients to participate in both iConquerMS™ and NARCOMS as the goals of each research project differ. Unique to iConquerMS™ is that patients will be invited to bring their extensive knowledge base and creative ideas to the table and are at the center of everything that occurs.

      It is our hope that patients participating in NARCOMS will contribute to iConquerMS. Speaking for those patients who have worked so hard up to this point to bring iConquerMS to the launching stage, we’d love to have those patients join us and help spread the word so that others may learn about this unique opportunity.

      Dave Bexfield


      • #4
        I completed the survey

        It did not take nearly as long as they said. Let's hope it will help, certainly cannot hurt.


        • #5
          Thanks determined and others for taking part! The full launch will start early in 2015, so you'll be hearing a lot more of this effort in the coming weeks.
          Dave Bexfield


          • #6
            20 Most Frequently Asked Questions about iConquerMS™


            MS Research and the Power of Health Data

            1. Why is iConquerMS™ needed?
            The iConquerMS™ initiative enables the collection of extremely large amounts of information required for research, and research is essential for answering key questions about MS. Unlike other data-gathering projects, iConquerMS™ is driven by individuals with MS, and is informed by their input and ideas.

            2. Why should I participate in iConquerMS™?
            iConquerMS™ will only succeed if thousands of people living with MS participate. iConquerMS™ relies on those with MS not only to contribute their health information, but to provide their ideas for research topics and questions to move research in directions that are important to them. That means that as a participant, you'll have the power to influence what types of research are conducted through iConquerMS™.

            3. What kinds of questions might iConquerMS™ help answer?
            There are many questions that may be answered through the use of health information from iConquerMS™. For example:
            • What causes MS, and is MS actually more than one disease?
            • What factors affect disease activity in MS?
            • Which MS treatments work best in which people?
            • How helpful are things like diet and exercise in reducing the effects of MS?
            • Can MS be prevented?
            • Is it possible to predict someone's future experience with MS based on the experiences of others?

            4. How many people with MS do you need?
            We’ve set an initial goal of 20,000 people living with MS as participants. Because MS is so varied, it’s also important to include diverse individual experiences.

            Data Collection

            5. How does iConquerMS™ protect my privacy and personal health information?
            The iConquerMS™ Project Team takes your privacy very seriously and has policies and processes in place to safeguard your identity and protect your health data. For instance, only authorized personnel at Accelerated Cure for MS will have access to your contact information, and this information will never be attached to the health information that we share with researchers. Before sharing your health information with researchers, all information that identifies you directly will be removed. In terms of data security, the iConquerMS™ Project Team will take industry-standard physical and electronic technical precautions to protect the information that you share with iConquerMS™.

            6. Will iConquerMS™ share my health information?
            Yes, the health information you contribute to iConquerMS™ will be shared in a de-identified manner to enable research. Qualified researchers will be invited to request health information from iConquerMS™ for the purpose of conducting research studies.

            7. Can I participate in iConquerMS™ if I already participate in NARCOMS or other MS studies?
            Absolutely! iConquerMS™ and NARCOMS are separate efforts and there's no restriction to participating in both.

            8. Will iConquerMS™ share my data with pharmaceutical companies?
            A Researchers from pharmaceutical companies and other academic, commercial, and government entities are invited to request de-identified data from iConquerMS™. These requests, like requests submitted by researchers in any sector, are carefully reviewed by the iConquerMS™ Research Committee. Decisions will always be made with the best interests of people with MS in mind.
            Connection to Research

            9. How does iConquerMS™ connect me to the research community?
            Your ideas about research topics that interest you will be shared with the Research Committee. As these ideas are developed into specific research queries, they can be shared with the wider research community.
            Please note that this website will not allow researchers to contact you directly without your prior permission.

            10. What kinds of research questions can I submit to iConquerMS™?
            You should feel free to submit questions and ideas on any topic related to multiple sclerosis.

            11. Will I know how my data is being used by researchers?
            Your information will be pooled with information from hundreds or even thousands of other people with MS. The pooled information is used by researchers to see patterns that would not otherwise be visible, and to gain insights into the causes and mechanisms of the disease.
            iConquerMS™ will provide updates about the research studies and their results as they advance.

            Your Involvement
            12. Can my medical providers join iConquerMS™?
            Your medical provider can participate by helping to spread the word about this initiative—please feel free to ask medical providers to contact Accelerated Cure for MS at (781) 487-0008.

            Funding and Other Support
            13. Who created the iConquerMS™ initiative?
            iConquerMS™ was started by the Accelerated Cure for MS, a nonprofit organization with proven experience developing and sharing resources with MS researchers worldwide. Other organizations have partnered with Accelerated Cure for MS to make the iConquerMS™ vision a reality.

            14. Who is funding the iConquerMS™ initiative?
            The initial 18-month funding for iConquerMS™ is provided by the Patient-Centered Outcomes Research Institute (PCORI), an independent, nonprofit organization authorized by Congress in 2010.

            Privacy and Security
            15. How does iConquerMS™ ensure my private medical information remains secure?
            iConquerMS™ takes your privacy very seriously and has policies and processes in place to safeguard your identity and protect your health data. For instance, only a very limited number of authorized personnel at Accelerated Cure for MS will have access to your contact information, and this information will never be attached to the health information shared with researchers. Before sharing your health information with researchers, all information that identifies you directly will be removed.

            In terms of data security, the iConquerMS™ Project Team takes industry-standard physical and electronic technical precautions to protect the information you share with iConquerMS™.

            EHRs for Research

            16. Why are you asking for my EHRs?
            Your EHRs contain important information about your health status and medical history, in particular your MS diagnosis, treatment, and overall experience. This information can be very powerful when combined with the data from thousands of others living with MS. Researchers can analyze the collected data to better understand, treat, and ultimately cure MS.

            17. What will happen to my EHRs once they are uploaded to iConquerMS™?
            Your EHRs will be encrypted and securely stored on the iConquerMS™ portal, where you can access them at any time. It is important to note that simply uploading your EHRs to iConquerMS™ does not result in your data being shared with researchers. After uploading your EHRs, you actively choose whether to share your EHR data with researchers.

            18. How will researchers use my EHRs?
            Researchers will use your EHRs in a de-identified manner. Any information that identifies you directly will be removed.
            Researchers will use this data to find patterns that might not be visible otherwise. And then they can use these patterns and insights to figure out the causes of MS, determine who will respond best to various therapies, and find new improved treatments for the disease.

            EHR Information

            19. What file types can I upload to iConquerMS™?
            At this time, only PDF and XML documents can be uploaded to the iConquerMS™ portal.

            20. What if my health records are contained in multiple files (i.e., one for lab tests, one for immunizations, one for prescriptions, etc.)? Which records should I provide?
            iConquerMS™ welcomes all different types of health records because all this information is potentially valuable to MS research efforts. There is no limit to the number of files you can upload to iConquerMS™.
            Dave Bexfield


            • #7
              You guys never cease to amaze me. I've always said the folks at ActiveMSers have a different level of commitment, and this seals that deal.

              I just heard from iConquerMS and currently our band of misfits is leading the pack for participation among all MS websites and blogs. Just thought I would pass that along and say a humble thank you. We're making a difference, and I could not be more proud.
              Dave Bexfield


              • #8

                Filled it all out whilst eating my lunch at work. Didn't take long & there's only a *tiny* bit of hummus in my keyboard.


                • #9
                  Thanks Mouse! Looks like the organizers at iConquer have finally been successful at convincing me to take on a bigger role with their efforts. They need a lot more patients to register, and I think I can help in many areas (beyond ActiveMSers). Anything that gets us closer to that elusive cure. More to come....
                  Dave Bexfield


                  • #10
                    How motivated are members of ActiveMSers to help us get closer to a cure? Hella-motivated it turns out.

                    When the National MS Society recently recruited MSers for a patient registry, they tweeted the request to 43,000 followers and posted it to their Facebook page, which has nearly 300,000 members. Incredibly, even though ActiveMSers is run by one dude and has only 1,800 followers on Twitter and Facebook combined, our members stepped up to such a degree that our efforts outpaced the largest MS society in the world. Un-freaking-believable.

                    Social media and recruitment in the NARCOMS registry

                    C. Crowe1, S.S. Cofield1, A.R. Salter1, T. Tyry2, S. McNeal3, G.R. Cutter3, R.J. Fox4, R.A. Marrie5, NARCOMS
                    1University of Alabama at Birmingham, Birmingham, AL, 2Dignity Health, St. Joseph’s Hospital and Medical Center, Phoenix, AZ, 3Biostatistics, University of Alabama at Birmingham, Birmingham, AL, 4Neurology, Cleveland Clinc, Cleveland, OH, United States, 5University of Manitoba, Winnipeg, MB, Canada

                    Background: Recent research shows that most of the populations of the US and EU have access to and use the Internet as a primary source of health information. Recent North American Research Committee on MS (NARCOMS) research has shown that 85% of participants have access to the internet, and 59% of participants use the Internet as their primary source of MS-specific health information. With over 1 billion Facebook users and 230 million Twitter users, social media and online advertising are potential recruitment tools for research.

                    Objective: To describe social media and online tools used in NARCOMS recruitment.

                    Methods: NARCOMS is a self-report registry for MS with over 37,000 participants. NARCOMS participants complete an enrollment survey followed by semi-annual surveys. About 70% complete surveys online while the rest mail in paper surveys. NARCOMS began using Google AdWords in August 2012 and Twitter (@NARCOMS) in February 2013, and actively pursued collaborations with other MS and neurology outlets to increase online visibility of the registry.

                    Results: Since August 2012, the Google AdWords has been viewed over 260,000 times with 89% of views on search engines outside of Google; 56% were viewed on smartphones. The most common views or clicks on the ad were from: NARCOMS, multiple sclerosis, MS treatment, and MS symptoms in women. In 2015, 43% of new enrollments reported hearing about NARCOMS from the Internet, Twitter, or Facebook. On Twitter @NARCOMS had high-profile Tweets by well-known researchers, media outlets and celebrities living with MS. In 2011-2012, NARCOMS enrollments averaged 2.3 enrollments/day. Since pursuing an online presence enrollment increased to 2.9/day through 2014. In March 2015, after a National MS Society online article, Tweet (@mssociety; 40,000 followers) and a Facebook post with a direct link to NARCOMS, enrollment increased from 5 to 109 in one day, with enrollment averaging 9/day in the week following. One week after a Tweet by Ann Romney (@AnnDRomney; 202,000 followers) and Brigham and Women's (@BrighamWomens; 20,000 followers) on an article in the magazine NARCOMS Now, Google AdWord views increased from 517/day to 1406, and clicks on the ad increased 200%. 2015 enrollment through March 2015 is 4.9/day.

                    Conclusions: Social media approaches to recruitment appear to quickly increase enrollment numbers. It will be important to follow whether individuals who have enrolled after social media efforts continue to participate.
                    Dave Bexfield


                    • #11
                      iConquerMS is making another recruitment push. If you are not yet involved with this critical MS research project, the time to jump in is now. Thanks gang.

                      Dave Bexfield