FAQs About Data Collection
You will be asked to contribute information about your MS history, symptoms, and treatments. In addition, you’ll be asked about your general health and health history; your gender and other demographic information; family history; nutrition; lifestyle; and exposure to environmental factors. You will also be asked to obtain and contribute your Electronic Health Records (EHRs), also known as Electronic Medical Records (EMRs).
Yes, the health information you contribute to iConquerMS™ will be shared in a de-identified manner to enable research. Qualified researchers will be invited to request health information from iConquerMS™ for the purpose of conducting research studies. The iConquerMS™ Research Committee will oversee the approval process for these requests. In other cases, qualified researchers will be asked to use iConquerMS™ health information to conduct research studies that arise from questions submitted by iConquerMS™ participants. This process will also be overseen by the iConquerMS™ Research Committee.
In addition, statistics and summary information based on all of the participants' health information pooled together will be shared with iConquerMS™ participants and others to show, for example, what types of people are participating and how the participant base is growing over time.
We want to make sure that you clearly understand how and why the study is being conducted, as well as the ways you will be asked to participate and any risks or benefits there are in doing so.
This informed consent statement, along with other iConquerMS™ materials, has been reviewed and approved by an Institutional Review Board.
iConquerMS™ is different in several ways from other MS data-collection efforts, such as PatientsLikeMe and NARCOMS. First, it is a nonprofit endeavor governed by people affected by MS and includes their voice every step of the way. Second, it is centered on research driven by people affected by MS on topics of interest to them. iConquerMS is connected to other people-powered research networks and clinical networks through its strong relationship with the Patient Centered Outcomes Research Institute (PCORI). This gives us the power to easily contribute our data to many research efforts and gives MS researchers access to data from millions of people across the country. While other efforts share some of these qualities, iConquerMS™ is the only MS research initiative that is nonprofit, people-centered and governed, and part of a nationwide research network.
Absolutely! iConquerMS™ and NARCOMS are separate efforts and there's no restriction to participating in both.
From time to time, there will be new surveys for you to complete on the site; you'll be notified when these are ready. In the near future, you'll be asked to provide health status updates to iConquerMS™ whenever certain events happen, such as a relapse or a change in treatment.
In addition to returning to update your health information, please visit as often as you'd like. You will be able to read updates about the initiative, see summaries about the pooled data from all participants in iConquerMS™, and learn about the research that is underway. We always welcome your feedback and ideas.