Image researchers with access to big data on multiple sclerosis patients right at their fingertips, well at least 20,000 sets of data as per the iConquerMS goal. iConquerMS sports the slogan “Your Data Has Power” encouraging all people living with multiple sclerosis to participate in the research by sharing their medical data with this clearinghouse to form a better understanding of the causes of MS, why different treatments work for some and not others, and the factors related to progression rate differentials. iConquerMS is “a bridge connecting you and others living with MS to the research community.” This bridge is a two-way street of information. Patients continue to participate in surveys and health status updates over time to provide a solid understanding of disease progression and therapy response. iConquerMS will be reporting research news and findings. You can even submit your own ideas for study topics. Participants may withdraw at anytime. http://bit.ly/1xxevxX – short video and dashboard information.
“The MS Patient-Powered Research Network (MS-PPRM) is a ground-breaking initiative that will help to drive research to end MS forever,” said Timonthy Coetzee. On November 23, 2014 iConquerMS.org was launched by the Accelerated Cure Project for MS empowering all MS patients to make a difference in multiple sclerosis research. Check-out their new website and your opportunity to participate in this massive undertaking of data. Consider spreading the word, providing feedback, becoming an ambassador, and/or donating.
All identifying individual information is removed from your data before sharing it with researchers. iConquerMS “takes your privacy very seriously and has policies and processes in place to safeguard your identity and protect your health data.” Researcher requests for access to data must be approved by a committee. As with any electronic information online, there is always a chance of unauthorized access.
In 2010 Congress authorized the non-profit organization Patient-Centered Outcomes Research Institute (PCORI). From there MS-PPRM was developed with iConquerMS as a key component. The flow chart can be found on https://www.iconquerms.org/pcori. NMSS, MSF and MSAA all support iConquerMS. FAQ @ https://www.iconquerms.org/faq.