iConquerMS Empowers Multiple Sclerosis Patients
Individuals with multiple sclerosis have the power to advance the research and discovery efforts of scientists and ultimately improve MS treatment. An opportunity to wield that power is possible through the iConquerMS(TM) campaign, which is a new endeavor by the nonprofit organization, Accelerated Cure Project for Multiple Sclerosis (ACPMS).
The battle cry of the iConquerMS campaign is “Your health information has power!” iConquerMS is a patient-governed, patient-driven initiative that allows individuals with multiple sclerosis to securely and safely add their health information via the iConquerMS portal, suggest topics of research, and get information about studies currently in progress.
According to Robert McBurney, PhD, the president and CEO of ACPMS and principle investigator in the campaign, “We are the first truly patient-powered big data endeavor in MS.”
When individuals contribute their health data, it will allow “the research community to shape and accelerate a new generation of research studies,” said McBurney in a press release. He also noted that the “goal in 2015 is to recruit 20,000 MS patients, each contributing their health data and research ideas.”
That data will hopefully help researchers tackle a major challenge in multiple sclerosis: the inability to pinpoint which characteristics of the disease can determine which treatment strategies will be most effective for which patients. There is a desperate need for personalized medicine in the MS community.
If you are hesitant about signing up for such an initiative and providing sensitive health information, the ACPMS explains that all information submitted by patients will be de-identified before it is provided to researchers. In addition, many MS advocacy organizations are encouraging their members to get involved with this new effort, including the Multiple Sclerosis Association of America, the Multiple Sclerosis Foundation, the National Multiple Sclerosis Society and Can Do MS.
Initial funding for the campaign came from the independent, nonprofit organization Patient-Centered Outcomes Research Institute. ACPMS also has partnered with the Arizona State University and Feinstein Kean Healthcare to launch the initiative.
If you are interested in learning more or in contributing your health information, visit the iConquerMS website.