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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
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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:
https://iconquerms.org/
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.
-Dave
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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 www.iConquerMS.org portal is the online home for all information about the initiative, and the gathering place for thousands of individuals living with MS.
Overview
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 iConquerMS.org 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 iConquerMS.org. 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.
Goals
• 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
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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:
https://iconquerms.org/
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.
-Dave
------------------------
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 www.iConquerMS.org portal is the online home for all information about the initiative, and the gathering place for thousands of individuals living with MS.
Overview
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 iConquerMS.org 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 iConquerMS.org. 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.
Goals
• 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
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