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…
ok. your welcome.ReplyDelete
How is this different from the NARCOMS registry that has been around for several years? I've been participating in that survey every 6 months since it's inception.ReplyDelete
That’s an excellent question, Jim, and one which I asked shortly after learning about the iConquerMS initiative myself. Basically, iConquerMS is different in that it is a patient-driven, patient-centered, patient-powered research network. From the initial concept of the project, to members of the Governing Board and Committees (of which Marc and I serve on the Communications Committee), to the participants who will contribute their ideas, experience and data, patients have been and will continue to be involved at every step of the way.Delete
NARCOMS (National American Research Committee on Multiple Sclerosis) was established by the Consortium of MS Centers as a traditional patient registry which collects data every 6 months. At times, participants in NARCOMS may be selected based on demographics or disease/treatment history to participate in specific research studies sponsored by various companies or organizations who provide services or products to MS patients. At iConquerMS™, registered patients will complete research surveys, but will also be able to contribute data that has not been part of NARCOMS-type studies previously, such as that captured by Electronic Health Records (EHRs).Delete
The most exciting part of iConquerMS™, I believe, is that participants will also be able to submit their own suggestions for future research studies and will collaborate with the scientific community to bring our research questions to life. With iConquerMS™, the patient/participant has a significant voice in determining what is important and will be actively involved in the development of studies that are implemented within this MS Patient-Powered Research Network (MS-PPRN).Delete
It would be a great idea for MS patients to participate in both iConquerMS™ and NARCOMS as the goals of each research project differ. Unique to iConquerMS™ is that patients will be invited to bring their extensive knowledge base and creative ideas to the table and are at the center of everything that occurs.Delete
I hope that you will consider participating in iConquerMS in addition NARCOMS. Speaking for those patients who have worked so hard up to this point to bring iConquerMS to the launching stage, we’d love to have you join us and to have you help spread the word so that others may learn about this unique opportunity.
Marc, thanks for this information, and Lisa, I really appreciate all of your additional comments. I shall be spreading the word on this.Delete
This is very exciting, and I will definitely be spreading the word as well! Thank you!Delete
Hi Marc, and Lisa, this is great and I'll be signing up. Personal empowerment towards a greater good, gotta love it! Certainly more productive than telling lumosity how I feel today. Diagnosed two years ago, impacted for much longer than that, I think the state of MS care is sad from an informational perspective, and possibly the cause of as much pain as any other cognitive issue. The meds/money rackets are sadly predictable impediments, but the lack of basic answers to some pretty basic questions is worse. Thank you both for your efforts... and Happy Thanksgiving.ReplyDelete
The question that came to mind is that if this new registry is so patient-driven, why are there not MS patients on the Board? Furthermore, I just clicked on the bios of 4 people randomly (members of the Board), and as an MS patient, I am always suspicious when Board members of organisations like this hold stocks and financial shares in large pharmaceutical companies. Just sayin'.ReplyDelete
Christopher, in regards to board members relationships with pharmaceutical companies, it's important to keep in mind that, for better or worse (mostly for worse) big Pharma has taken a leading role in medical research, as government funding has dried up due to political and economic circumstances. As far as members holding shares of stock in pharmaceutical companies, my rich uncle taught me long ago that when it comes to investing, you should invest in what you know. So, it's of no surprise to see that people intimately involved in medical research would invest in the pharmaceutical/medical companies. It's what they know…
Christopher, This is an excellent question. In looking through some of the biographies, not everyone who has been diagnosed with MS mentioned that in their short bio. Among the Governing Board 4/9 members live with MS including Laura, Fiona, Rachel and Heather. On the Membership Committee, 5/9 members live with MS including Stephanie, Matt, Christie, Lindsey, and Tracy. On the Communications Committee, also 5/9 members live with MS including Lisa, Marc, Amy, Karen, and Jason. On the Research Committee, 3/9 members has MS including Cherie, Lamar, and EJ. That gives at least 17/36 members of the governance structure who have a form of MS. Of the remaining 19 members, 5 represent MS advocacy organizations in the US and at least 4 come directly from ACP. Without a specific mention of their diagnosis, it is hard to identify who has MS. I hope that this helps.ReplyDelete
Lisa, thanks for your comprehensive responses to my readers questions. Your efforts are greatly appreciated.Delete
I signed up, I believe that information for researchers is crucial to finding a cure.ReplyDelete
Thanks Marc, for keeping us up to date.
Have followed you for some time now. Wife has been diagnosed for some 25+ years now. Just got sent this link. Have you seen anything about it? http://www.al.com/news/index.ssf/2014/12/newly_approved_multiple_sclero.htmlReplyDelete
I wrote all about Lemtrada just a few weeks ago. Here's the link:Delete
Lemtrada is a very powerful drug, however, it seems to work best on patients with highly active relapsing remitting disease, and is of no use to people with SPMS or PPMS.
My sister battles PPMS and I sent this to her - and now to you - to offer some hope:
( snip) In a parallel experiment, Goldman injected immature human glial cells into mouse pups that were poor at making myelin, the protein that insulates nerves. Once inside the mouse brain, many of the human glial cells matured into oligodendrocytes, brain cells that specialise in making the insulating material, suggesting that the cells somehow detected and compensated for the defect.
This could be useful for treating diseases in which the myelin sheath is damaged, such as multiple sclerosis, says Goldman, and he has already applied for permission to treat MS patients with the glial progenitor cells, and hopes to start a trial in 12 to 15 months.
Very Best to You,