Unwilling or unable to provide informed consent. 21 years of age or older at the time of informed consent. This is an ongoing studyĪnd will last for an indefinite period of time. This study will be conducted online via the website. While the MS-PPRN is focused on enrolling people with MS, people without MS are also welcome Introduction of the Members of Panel Peer Baneke, UK Multiple Sclerosis International. As the MS-PPRN is part of PCORnet, theĭata collected in surveys you complete may also be shared with researchers studying other Patient-Centered Outcomes Research Institute (PCORI). National Patient-Centered Clinical Research Network. With its rich history of aggregating and data sharing, it’s no wonder that ACP used the funding to create iConquerMS, a people-powered research network of over 4,700 individuals with MS worldwide who contribute data, samples and expertise to drive research on topics they care about. The MS-PPRN will be part of a national network for conducting research called PCORnet, the First, people with an interest in multiple. iConquerMS is a new initiative that allows people living with multiple sclerosis to share their health data and ideas online to fuel MS research. How do we accomplish that It is a multi-step process. Questions that researchers and people with MS have regarding the disease, including its One of the main goals of iConquerMS is to elevate the voice of people with MS into research. Scientists who are studying MS and similar diseases. Survey data will be made available to research (MS-PPRN) that includes at least 20,000 people with multiple sclerosis (MS) who contributeĭata on their health and other topics. Detailed description The purpose of this study is to create a Multiple Sclerosis Patient-Powered Research Network To contribute their health data and ideas to advance and accelerate research into MS. Please read further to learn about how iConquerMS™ can support your research.NCT ID NCT02486562 Status Recruiting Phase Start date November 2014 First recieived date Brief summary iConquerMS™ is a research initiative developed by and for people with multiple sclerosis (MS) We help multiple sclerosis treatments move at a faster pace by facilitating an open online community for MS researchers. Other organizations listed include iConquer MS, Genetech. iConquerMS TM launched nationwide in February 2015 and, with more than 2,000 patients registered as research participants, constitutes a large and growing cohort for data-driven research into topics of interest for people living with MS. We welcome researchers in the US and worldwide to learn more about conducting research with iConquerMS™ and to contact us to explore research studies and collaborations. has published a list of The Top 25 Social Networking Sites People Are Using. IConquerMS™ is supported by the Patient Centered Outcomes Research Initiative (PCORI) and is part of PCORnet, the National Patient-Centered Clinical Research Network, a large, highly representative, national network for conducting clinical outcomes research. It is governed by a board and committees populated by experts in various fields, the majority of whom have been diagnosed with MS. IConquerMS™ was created by the nonprofit Accelerated Cure Project in collaboration with leading healthcare communications firm Feinstein Kean Healthcare and the Complex Adaptive Systems Initiative at Arizona State University. iConquerMS is part of a national research network called PCORnet that will enable. iConquerMS is a new initiative that allows people living with multiple sclerosis to share their health data and ideas online to fuel MS research. iConquerMS brings together people with MS, their care partners, researchers and others to understand MS and search for solutions. Research topics can include treatments and outcomes, lifestyle and activities, quality of life, employment and finances, health care, biomarkers of MS, and many other topics. iConquerMS: People-Powered Research Networkbridged to Researchers and Other Stakeholders Launchedin Nov 2014 Improved Needs, IdeasPlans, Resources Data, SamplesDisseminationAnalysis, Results Health, Advocacy >4,600 registered participants, growing daily Established with funding from PCORI (PCORnet1. Patient-Powered Research Network (PPRN) started by the Accelerated Cure Project for multiple sclerosis (MS). IConquerMS™ is a research network composed of people with MS and people who care about MS who contribute health data, biosamples, knowledge and ideas to enable and accelerate MS research.ĭata, biosamples and insights contributed by iConquerMS™ participants under informed consent are available to researchers investigating topics important to people with MS. It is an initiative by and for people living with MS that lets them share their. About iConquerMS™: the Multiple Sclerosis Patient-Powered Research Network iConquerMS puts people living with MS at the center of the fight against MS.
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