Researchers submitted online proposals to request access to information that had already been collected from iConquerMS participants. ![]() The information provided by network participants could be used in other research studies. Basic information, such as age, sex, occupation, and marital status.When people with MS signed up to join iConquerMS on its website, they took surveys that covered Patients gave their consent before this information was shared. They completed surveys and arranged for their health records and blood and other biological samples to be sent to researchers through the network or the Accelerated Cure Project for Multiple Sclerosis, which started a bank of MS biological samples in 2006. Information about patients for use in network research studies came from the patients themselves. The remainder are caregivers, family members, and others interested in MS. The iConquerMS network has enrolled 4,920 members. TitleĪccelerated Cure Project for Multiple Sclerosis Partners Ogilvy and Ordinal Data, Inc., helped plan how the network would manage information and reach out to people interested in MS. As of March 2019, the network included 4,920 people affected by MS. The primary goal of iConquerMS is to encourage and conduct research that reflects the priorities and concerns of people with MS. Led by the Accelerated Cure Project for Multiple Sclerosis, iConquerMS connects people with MS, advocates, caregivers, doctors, and researchers. No cure exists for MS, but treatments can improve symptoms and slow its progression. When people have MS, messages between the brain and body slow down, causing symptoms like muscle weakness, vision problems, trouble with balance and coordination, and difficulties thinking and remembering. MS is a disease that affects the brain and spinal cord. IConquerMS is a PPRN focused on the needs of people with multiple sclerosis, or MS. Lead or join in research studies that focus on the community’s priorities.Involve patients, caregivers, families, and communities in the research process, including recruiting people to participate in research studies.Create a way to collect and share data reported by patients for research.Create ways to involve patients, families, and caregivers in decision making about the network. ![]() This report outlines iConquerMS’s achievements in building its research infrastructure capacity to PCORI funded iConquerMS’s participation in PCORnet from 2015 to 2018. Several PPRNs, including iConquerMS, participated as Partner Networks in PCORnet. Patient-Powered Research Networks (PPRNs) are networks operated and governed by patients, families, caregivers, and community members in close collaboration with clinical researchers, with the goal of shaping and conducting research to better serve their communities and improve their health outcomes. PCORnet is made up of Partner Networks that harness the power of large amounts of health data and patient partnerships. PCORI funded the development of PCORnet ®, the National Patient-Centered Clinical Research Network, to make it easier and more efficient to conduct research.
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