FAQs

Caregivers FAQs

FAQS ABOUT PARTICIPATION

Who can join iConquerMS™ Caregivers?

iConquerMS is designed by and for people who take care of someone with MS and wants to share their knowledge and experiences with the wider MS community and with clinicians and researchers who are working on solutions to help both people with MS and those who love them. If you provide any level of support – whether it’s checking in regularly and picking up groceries or helping with activities of daily living and providing significant care at home – you can participate.

How can I contribute suggestions for improving iConquerMS™ Caregivers?

Email us at: info@iConquerMS.org

FAQS ABOUT DATA COLLECTION AND SECURITY

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™ Caregivers materials, has been reviewed and approved by an Institutional Review Board.

Will iConquerMS™ Caregivers share my health information?

Yes, the health information you contribute to iConquerMS Caregivers will be shared in a de-identified manner to enable research. Qualified researchers will be invited to request health information from iConquerMS Caregivers 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 Caregivers 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™ Caregivers 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.

How will iConquerMS™ Caregivers protect my privacy?

All of the health information you submit to iConquerMS Caregivers will be de-identified, meaning any information like your name and address will be removed.