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).
The iConquerMS™ Project Team takes your privacy very seriously and has policies and processes in place to safeguard your identity and protect your health data. For instance, only authorized personnel at ACP will have access to your contact information, and this information will never be attached to the health information that we share with researchers. Before sharing your health information with researchers, all information that identifies you directly will be removed. In terms of data security, the iConquerMS™ Project Team will take industry-standard physical and electronic technical precautions to protect the information that you share with iConquerMS™.
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 living with MS and includes the patient voice every step of the way. Second, it is centered on research driven by people living with MS on topics of interest to them. We're also part of PCORnet, a national network of research networks. 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, patient-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.
Researchers from pharmaceutical companies and other academic, commercial, and government entities are invited to request de-identified data from iConquerMS™. These requests, like requests submitted by researchers in any sector, are carefully reviewed by the iConquerMS™ Research Committee. Decisions will always be made with the best interests of people with MS in mind.