written by: The Wheelchair Kamikaze
Okay, my fellow MSers, are you sick of sitting on the sidelines like powerless spectators observing a do or die contest that will determine your very own fate, waiting anxiously for neurologists, researchers, and pharmaceutical companies to ride to the rescue? Are you, like me, sick and tired of being sick and tired, weary of having very little ability to do anything about the situation except listen to the same old same old, held hostage by a status quo that offers more questions than answers? Do you just for once want to pick up a club and give MS a good smash in the kisser, to kick the fiend squarely where the sun don’t shine, to metaphorically extract a pound of flesh even as the disease quite literally attacks your own? Do you want to actively help conquer MS? Well, take note, that chance has arrived, and you need not even get up from your computer to help wage war on our mutual enemy, multiple sclerosis.
Enter iConquerMS, a new patient driven research initiative that allows those living with MS to participate in a groundbreaking research effort aimed at amassing the most comprehensive database about MS patients and the manifestations of their disease ever created. Through the web based iConquerMS portal (click here) patients can participate in a series of surveys and questionnaires that will soon form the most complete repository of information about the disease and those who suffer from it in existence. Researchers from around the globe will be granted access to this data, a wealth of information that could very well reveal brand new insights about the disease itself and those who suffer from it. In addition, the iConquerMS website provides patients and those who care about them the ability to address researchers directly with questions and suggestions, thereby helping to shape the future of MS research.
But first things first – what exactly is iConquerMS? The face of iConquerMS is a user-friendly website, iConquerMS.org (click here), designed to allow MSers to easily contribute information about themselves and their disease. The driving idea behind iConquerMS is the concept of Big Data, a pooling of vast amounts of vital information that can reveal patterns and trends that otherwise wouldn’t be detected. Just as the intricate actions of the tides can’t be determined by observing a single drop of water but instead only by studying the oceans themselves, the complexities of multiple sclerosis may very well best be revealed by the pooling of data from tens of thousands of patients. Big Data-enabled MS research may help answer questions such as: what causes the disease and what strategies might prevent it, cure it, or arrest its progression; which treatments work best in which individuals; and what factors affect the progression of the disease.The initial 18 month funding for iConquerMS has been provided by the Patient Centered Outcomes Research Institute (PCORI), an independent nonprofit organization authorized by Congress in 2010. Tasked with funding research that will provide a chance to overcome the challenges presented by traditional models of medical research, PCORI is working to close the gaps in evidence needed to make the paradigm shifting medical breakthroughs so urgently needed to rid the world of many dread diseases. – Continue
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