FAQs About Data Collection

Why do I need to agree to an informed consent statement to submit my data?

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™ Kids & Teens materials, has been reviewed and approved by an Institutional Review Board.

Will iConquerMS Kids & Teens share my health information?

Yes, the health information you contribute to iConquerMS™ Kids & Teens will be shared in a de-identified manner to enable research. Qualified researchers will be invited to request health information from iConquerMS™ Kids & Teens 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™ Kids & Teens participants and others to show, for example, what types of people are participating and how the participant base is growing over time.

What kinds of information will iConquerMS Kids & Teens ask me to contribute?

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.