The Accelerated Cure Project Launches iConquerMS™
How would you like to take the multiple sclerosis research world by storm? Get prepared, because the time has come for you and me, along with our many MS friends and acquaintances throughout the country, to do just that.
No longer are we merely clinical guinea pigs or the subjects of market research, we are the leaders and partners in research that may lead to discoveries that improve numerous lives, identify more effective therapies, and ultimately fill in the missing puzzle pieces needed to cure MS.
Let me tell you about an exciting opportunity; one which I believe you will want to be a part of right from the beginning.
Who wants to Conquer MS?
Each of us conquer MS in unique ways every single day. One day, I may conquer MS by riding my exercise bike for 30-40 minutes, hooyah; another day, I may conquer MS by talking to someone newly diagnosed with this disease and sharing my experience.
In 2001, the Accelerated Cure Project (ACP) for MS, a nonprofit organization based in Boston, was started by Art Mellor, a person living with MS, who desired to conquer MS by accelerating efforts towards finding the cure. Approximately one year ago, ACP received a sizable grant from the Patient-Centered Outcomes Research Institute (PCORI), an independent, nonprofit organization authorized by Congress in 2010, to establish a patient network and online portal to advance research. PCORI’s mission is to fund research that will provide patients, caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions.
With initial funding from PCORI, ACP has created the Multiple Sclerosis Patient-Powered Research Network (MS-PPRN), also known as iConquerMS™. The iConquerMS™ initiative is one of 18 original patient-powered research networks established to collect and use health data to improve healthcare. The individual disease-based networks combine to create a national patient-centered clinical research network called PCORnet.
What is iConquerMS™?
The iConquerMS™ initiative is a novel way for you and me and all of us living with MS to work together to fight multiple sclerosis. It provides one centralized location where people with MS are empowered and enabled to securely contribute their health data, connect with others, and submit ideas to advance research.
Each of us is the expert on how MS affects our body and our lives. We have the information and data which researchers need to look for patterns. Each piece of data when combined with hundreds of thousands of other pieces of data becomes what is known as ‘Big Data’ and iConquerMS™ aims to amass the largest single source of combined data regarding MS in the world to date.
As part of iConquerMS™, we will be able to submit research questions and interact with the scientists who will take our questions, formulate formal research queries, and design the tools to answer those questions. Potential research questions can be almost anything; I plan to submit a question related to effective therapies for sexual dysfunction in pre- or peri-menopausal women with MS. What research questions would you like to explore?
How is iConquerMS™ different?
At the heart of iConquerMS™ are people living with this disease, from those with the initial concept, to members of the Governing Board and Committees, to the participants who will contribute their ideas, experience, and data. iConquerMS™ is unique in that it is endorsed and supported by all major MS organizations in the United States, including NMSS, MSF, MSAA, and CanDoMS. Leaders from each organization have joined MS patients, researchers, and experts in the field to serve on iConquerMS™ Committees and Governing Board
As an MS patient advocate, I am proud to serve as Chair of the Communications Committee for iConquerMS™. When you check out the website at iconquerms.org, you may recognize many familiar names and faces of fellow MSers also serving as committee members and staunch supporters of the initiative.
How can you contribute to iConquerMS™?
Register at iconquerms.org. You will find informed consent information that tells you the details on how your data will be used and how it will be de-identified so your individual identity is not attached to the records.
Enter your demographic data and complete surveys about life with MS. Currently there are four surveys available which took me about 20 minutes to complete after I registered. You may have completed similar surveys for your doctor or other research initiatives. Don’t worry about time, you can always take a break when you need to and come back to complete surveys later.
Share your electronic health records (EHRs), which can be as small as a single laboratory report or as complex as a complete medical history. No bit of data is too small or insignificant and you choose what to share. Detailed instructions are available, but you can always contact someone at iConquerMS™ for help if you have any questions or get stuck.
Submit your questions of what you think researchers should take a closer look at. (This is probably my favorite part.) The research committee, composed of people with MS and key scientists, will sort through our questions and make recommendations.
Share your experiences with iConquerMS™ with everyone you know! We are aiming for more than 20,000 registered participants by next summer. It’s a huge number, I know, but only a fraction of the number of MS patients in the US. We need your help to spread the word and recruit others like yourself who want to help conquer MS.
Connect with others. Later in December, iConquerMS™ will launch a forum for MS patients to discuss any number of topics related to multiple sclerosis and research. You will also receive periodic updates from iConquerMS™ via email (you can always opt out of these) on data gathering and research interests.
Please Join Me Now at iConquerMS.org!
As of this week, the digital doors to iConquerMS™ are open to the public and ready for us to collectively move forward the single largest long-term research project undertaken by MS patients in the world. I hope you will accept this invitation and register today!