This has been a long anticipated post for me- I finally get to tell you guys all about this new project I’ve been working on! A few months ago I was approached by the Accelerated Cure Project (ACP) to see if I wanted to help out with a new research initiative The project sounded amazing, and the words “Accelerated Cure” also sounded pretty darn good too! So without further ado, lets talk about iConquerMS!
What is iConquerMS?
Essentially it’s a patient driven data collection system. iConquerMS is a way for people with MS and researchers to quickly share data and information back and forth. This is awesome for several reasons:
It cuts cost and time for researchers, so that they can cut through some of that red tape and get on with their life saving discoveries.
It allows researchers to see trends among a huge group of participants, and see what areas should be further researched.
It could help answer questions like what causes MS, what treatments work best in which individuals, and what factors affect the progression of the disease.
It empowers us to use our information in order to finally make a difference, and to hopefully get us moving towards a cure!
How does iConquerMS work?
Data is shared through iConquerMS.org, where people with MS can register and participate. Participation can range from taking a few surveys, to helping the effort even more by sharing your health data. In exchange researchers will let you know how your data is being used, and what insights they have gleaned from it. All research findings will be shared with participants and other researchers.
Who are these people and why should I trust them with my information?
A great question, that one that I hope all of you would ask before diving in!
The Accelerated Cure Project for MS (ACP), Feinstein Kean Healthcare, and Arizona State University came together to launch the iConquerMS portal using grant money received from the Patient Powered Research Network. The ACP already has a repository of data and biosamples that researchers can use towards research efforts. They have already assisted with 60 research studies, effectively cutting the time and cost of many important research efforts.
Researchers from NIH, academic institutions, and pharmaceutical organizations can work with iConquerMS. One of the most exciting features is that people with MS will be able to ask researchers questions, and suggest ideas for further research efforts.
iConquerMS is supported by every major MS group including the National MS Society (NMSS), and the Multiple Sclerosis Association of America (MSAA). We are also collaborating with a network of MS clinics.
Many of you are familiar with another great site, PatientsLikeMe.com. The concept is very similar, except that it is specific to MS. I hope you are as excited, and I look forward to hearing what you think!!
Here’s a link to a video to help get you started, and show you all the cool features on the site!