The Accelerated Cure Project for Multiple Sclerosis has launched iConquerMS, a nationwide initiative by and for individuals living with multiple sclerosis who recognize the power of their health data and insights and want to harness that power to fuel research. The initiative's portal, www.iConquerMS.org, enables all people living with MS to play an active role in research, empowering them to securely submit their health data, propose topics of research that are most important to them, influence the research that is carried out by the initiative and become informed about the research process and specific studies.
"Our ambitious agenda is nothing less than establishing a new model for research in multiple sclerosis, one that also can be applied to other neurological diseases," said Robert McBurney, Ph.D., president and CEO of the Accelerated Cure Project for MS and the Principal Investigator for iConquerMS. "Our goal in 2015 is to recruit 20,000 MS patients, each contributing their health data and research ideas and engaging with the research community to shape and accelerate a new generation of research studies."
McBurney noted the differences between iConquerMS and traditional data collection efforts for research. He said, "iConquerMS is nonprofit, as well as patient-governed and patient-driven. In addition, as the only multiple sclerosis initiative currently in PCORnet, the National Patient-Centered Clinical Research Network, iConquerMS can contribute health data to other research efforts in a streamlined fashion, while also providing MS researchers access to data from millions of people across the country. We are the first truly patient-powered big data endeavor in MS."
"In my opinion, the proposed compilation of health-related and demographic data and biosamples from tens of thousands of MS patients located across the U.S. represents a significant addition to the research landscape and I enthusiastically welcome its creation," said Alberto Ascherio, M.D., Dr.P.H., professor of epidemiology and nutrition, Harvard School of Public Health, professor of medicine, Harvard Medical School.
High-level representatives from many MS advocacy organizations—including the National Multiple Sclerosis Society, the Multiple Sclerosis Association of America, the Multiple Sclerosis Foundation and Can Do MS—are actively supporting and participating in the governance of iConquerMS, encouraging their members to get involved. In addition, Accelerated Cure Project's collaborating MS clinics around the country are alerting their patients to the opportunity to join.
Data collected at iConquerMS.org can enable insights on a wide variety of topics, such as symptoms, treatments and quality of life, and could lead to improved diagnoses, better treatment outcomes and, ultimately, cures for MS. Sign-up is a simple three-step process that can be completed in minutes, facilitated by a getting started instructional video. All health data from patients are de-identified before being shared with researchers.
The initial funding for iConquerMS is provided to Accelerated Cure Project for MS by the Patient-Centered Outcomes Research Institute (PCORI), an independent, nonprofit organization authorized by Congress in 2010. Accelerated Cure Project partnered with Arizona State University and Feinstein Kean Healthcare to achieve iConquerMS.