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.
One of my favorite MS nonprofits, the Accelerated Cure Project (ACP), is playing a key role in administering iConquerMS. I’ve been involved with the ACP for eight or nine years now, ever since I contributed blood and spinal fluid samples to their MS repository, which was put together to allow researchers access to biologic material provided by a wide spectrum of MS patients. I've been told by anonymous sources that my Wheelchair Kamikaze blood and spinal fluid samples are being kept in a hyper secure facility alongside alien entities recovered from the Roswell flying saucer crash, watched around the clock by a super vigilant squad of ferociously trained Sasquatches. We don’t want that stuff falling into the wrong hands, who knows what bedlam might result?
On a much more serious note, the privacy of patients contributing their data on the iConquerMS.org website will be even more strictly guarded than my blood and spinal fluid samples and will never be sold to advertisers or otherwise be used for commercial purposes. The IConquerMS project is devoted solely to fostering vital research in the fight against multiple sclerosis, and the iConquerMS website is designed to be highly interactive, promoting contact between people living with MS and researchers studying the disease.
I urge all patients reading this to register at the iConquerMS website (click here) and fully participate in the program, and by doing so take up arms in the battle against our shared enemy. iConquerMS will provide updates on how the data is used and what insights are emerging from the research to all registered users.
Here’s a video that helps explain the iConquerMS project, and how the participation of individual MS patients can help vanquish MS. Knowledge is power, folks, and contributing your info to the knowledge base compiled by iConquerMS may go a long way towards giving multiple sclerosis the good swift kick in the ass it so richly deserves.
Thanks in advance for helping to further the cause…