MyMSTeam guest blog post by: Lindsey Miller Santiago
As a person with MS, I understand the importance of connecting with others who are also living with this disease, and I wanted to share information about an exciting new research initiative that is powered by people with MS.
Shortly after I was diagnosed with MS in 2010, I started volunteering and then began working at Accelerated Cure Project for MS (known as ACP) in Waltham, MA. ACP has just launched a really cool project called iConquerMS™ and I hope you’ll participate in it.
iConquerMS™ is a research initiative by and for individuals living with MS who want to share information about themselves and their health to fuel research on important topics. It’s easy to participate – just go to iConquerMS.org, read and agree to the consent terms, and set up your account. From there you can fill out research surveys and even upload your electronic health records, if they’re available, for use in research studies. Just as important, you can contribute your research ideas – questions that you want to have answered that would make a real difference in your life – to influence the types of research that the initiative supports.
Our goal is to have 20,000 people with MS registered by September of 2015. We are already off to a great start with over 1,250 people registered from 48 states and several countries.
ACP, the lead organization behind this effort, is a nonprofit organization and the initial 18-month funding is provided by another nonprofit, the Patient-Centered Outcomes Research Institute (PCORI), an independent organization authorized by Congress in 2010. We are proud to be the only initiative dedicated to MS that is part of PCORnet, PCORI’s national research network.
The iConquerMS™ project team takes your privacy very seriously and has policies, processes and security technology in place to safeguard your identity and protect your health data. Only authorized personnel at ACP will have access to your contact information, and all personal identifying information will be kept separate from the research data shared with researchers.
Unlike other data initiatives, iConquerMS™ is governed and driven by people living with the disease. We are the ones who pose the questions to researchers about what is most important to us. We are the ones who answer the surveys that help researchers gain insight into MS. iConquerMS™ provides an opportunity for those of us living with MS to have our voices heard.
I am personally excited about the idea that this data we provide could be used to understand why certain people progress faster than others, why am I the only person in my family to get MS, and what supplementary treatments are the most helpful. These are just a few of the topics that I hope researchers will be able to study with our data.
Please join me and register at iConquerMS.org.
About the author: Lindsey Miller Santiago is a member of MyMSTeam, and the Development Associate at Accelerated Cure Project.