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Multiple Sclerosis Patients to Crowdsource Health Data

Brain networks

(NIH.gov)

3 February 2015. A new initiative, called iConquerMS, is recruiting 20,000 patients with multiple sclerosis in the U.S. to offer their health data and research ideas to find a cure for the disease. iConquerMS is an undertaking of the Accelerated Cure Project for MS, with the research network segment funded by Patient-Centered Outcomes Research Institute or PCORI.

The initiative aims to harness big data tools to help advance research in finding treatments for multiple sclerosis. The disease is known as an auto-immune disorder, where the body’s immune system is tricked into attacking the protective myelin sheath that covers nerve cells. Damage to the myelin interferes with signals between the brain and the rest of the body, causing a wide variety and severity of of symptoms, but can lead to disability. There is no cure for multiple sclerosis and current treatments are designed to help recover from attacks and manage symptoms.

iConquerMS is seeking widespread participation by patients to collect a large enough pool of data on multiple sclerosis to enable more comprehensive and detailed analysis of patterns in the disease that would not otherwise be apparent. The initiative’s organizers believe the data can help answer questions about causes of multiple sclerosis, identify candidates for various therapies, and find new or better treatments for the disease.

Data for iConquerMS are expected to come from patients’ health records, with identifying details removed. Participants will also be asked to complete occasional questionnaires, including suggestions for new studies, and feedback on the project.

The Accelerated Cure Project for MS sponsoring iConquerMS and based in Waltham, Massachusetts, promotes faster progress on treatments for multiple sclerosis, and has underway a repository of bio-specimen samples from more than 3,000 subjects, a large-scale collaborative research program, and an online community for researchers. Feinstein Kean Healthcare, a life sciences communications firm, wrote and designed the iConquerMS Web site content. Complex Adaptive Systems, a part of Arizona State University, working with with Life Data Systems Inc., provides the information technology behind the system.

In addition, iConquerMS is part of PCORNet, a national health care data network for researchers under the Patient-Centered Outcomes Research Institute or PCORI, a government-chartered organization that funds comparative effectiveness research for making better-informed health care decisions. PCORI is funding the national network portion of the project, one of its patient-powered research networks as the organization calls them. According to PCORNet’s Web site, funding for the network is about $989,000 and extends for 1.5 years.

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