Are you Ready to Help Conquer Multiple Sclerosis?
The Accelerated Cure Project (ACP), a non-profit organization based in Boston, was founded by a person living with MS, and its sole focus has been to facilitate research that will lead to a cure for Multiple Sclerosis. ACP has undertaken a number of exciting projects to work toward this goal, but none of them match the size of this one…. you and I have a central place to share our healthcare data and research ideas , through iConquerMS™.
This project is funded by the Patient Centered Outcomes Research Institute (PCORI), which gathers its money from the fee paid by all of us on our private health insurance premiums. This amount is only $1 per year per insured person, but spread across the entire US population, that adds up to some very impressive numbers. Even more impressive is this organization is charged with finding ways to shift to patient centered health care and research.
In keeping with the patient centered approach, the majority of people guiding the development of iConquerMS™ are like you and me – people living with multiple sclerosis. Many of the leaders within iConquerMS™ are names familiar to you from being a part of the online MultipleSclerosis community, including Lisa Emrich, Stephanie Butler, Christie German, Dave Bexfield and Marc Stecker.
MS research facilities and MS clinics are also represented through the presence of doctors and lead research scientists on the various committees. Think about this for a minute – I would wager that iConquerMS™ is the first time all of these key players and organizations have been gathered into one place, a place where you and I as people living with multiple sclerosis are leading the discussion and developing the research. And we are governing the project.
There is so much more I can tell you about iConquerMS™ , PCORI and my involvement with both, but I want to get on to something more important – let’s talk about you. What can you do to get involved? Quite simply, you begin when you Join iConquerMS™ . The details of this project, the sponsors, its use and the informed consent information is on the iCnquerMS™ website, but let me share a brief overview of what you can expect to find –
You will be asked to complete a few questionnaires that will look familiar to you – especially the MS Neuro Quality of Life (MSNQoL) survey which most of us do regularly for our doctors or if we participate in NARCOMS. This survey is a standard tool in all types of MS studies and is a critical piece of information even though it might appear to be pretty useless. The information from my own MSNQoL by itself means little except for me and my doctor, but if you have this completed by 20,000 people with MS, it gives a panoramic view of our quality of life. iConquerMS™ needs this type of big data to look for our cure.
Stop and think about BIG DATA and what it will look like when we have the electronic medical records of 20,000 people who live with MS and the information that researchers will be able to glean from this big picture.
The next piece of iConquerMS™ is what I get most excited about – we have an opportunity to suggest research topics. How many times have you wondered about your MS and a particular question comes to mind and you think it would be nice if someone looked into finding an answer? We want your research ideas – one of us might have just the right question that unlocks one of the many mysteries of multiple sclerosis. This word cloud is made from the research ideas already submitted –
We are asking a lot from everyone to make this giant step to participate by sharing your health data, and investing your time in helping to build our Big Data picture for research. But doesn’t MS ask a lot from us EVERYDAY?
Please join me at iConquerMS.org – share the excitement and power of patient centered research!
wishing you well,