Have you ever wondered how your MS experience compares with others? Your ability to go out and do things? The therapies you’ve used? Your symptoms? Your age and ethnic background?
Researchers from the Accelerated Cure Project for Multiple Sclerosis have been collecting this kind information for nearly two years from MS patients who’ve volunteered to fill-out online surveys. Though the group of patients is small, so far, their data is fascinating. For example, you can go to the iConquerMS.org website and register to see graphs outlining the ages, employment status and other demographic information about the unidentified volunteers. Or, you can see how they’ve answered questions about their social activities, sleep disturbances, mobility issues, and so on.
Patients get a say in the research
The goal of the project is to give people living with MS the ability to play an active role in research about the disease. This is done by giving them a way to securely provide health data for researchers to compare, to propose research topics that are important to the patients themselves and to become informed about the research process and specific studies. “Our ambitious agenda is nothing less than establishing a new model for research in multiple sclerosis,” says Robert McBurney, PhD, president and CEO of the Accelerated Cure Project for MS.
Using patients’ information to improve life with MS
Last August, iConqureMS launched its signature research project: REAL MS (Research Engagement About Life With MS). It’s a long-term study that will use the answers submitted via the online surveys to address things that impact the daily lives of MS patients. For example, information about which drugs and supplements work best for which people, which symptoms have the biggest impact on quality of life, or what people with MS can expect from making lifestyle changes.
REAL MS is modeled on the Framingham Heart Study, a community-based research study that has had a profound impact on the understanding of the causes of heart disease and how to treat and prevent it.
The project is supported by many top MS organizations, including the National Multiple Sclerosis Society, the Multiple Sclerosis Association of America, the Multiple Sclerosis Foundation, and Can Do MS. “Understanding the MS experience from the patient’s perspective is vital to improving the care of people with MS and to creating effective treatment paradigms,” according to the National MS Society’s Timothy Coetzee, PhD, on the project’s website.
A few more volunteers would be nice
When the iConquerMS project began in early 2015 it was hoped that 20,000 MS patients would be recruited to contribute their health data and research ideas. Unfortunately, as we approach the end of 2016 the project appears to be far from reaching that goal. The iConquerMS Fall 2016 newsletter reports that only about 3,100 volunteers have signed-up to participate in the database. I’m one of them.
Why not take a look at the iConquerMS web site and consider joining the group?
(You’re invited to check out my personal blog at: www.themswire.com)