How do I join iConquerMS™?
Joining iConquerMS™ involves three steps after you click on the Join Now button: agreeing to an informed consent, providing your email address and completing your personal profile.
What do participants do?
As a participant, you can easily and privately take surveys, on the iConquerMS.org portal, about your experiences with MS. You may choose to participate in focus groups or clinical studies that the iConquerMS™ initiative connects you to. You may also suggest research topics and areas of study that matter most to you, and can receive updates on what researchers are learning. The value of your contribution is greatly enhanced if you complete all the iConquerMS™ surveys, though participation is always voluntary.
How does iConquerMS™ work?
iConquerMS™ is a bridge, connecting you and others affected by MS to the research community. You can submit your research ideas and respond to, and improve, research proposals submitted by members of the research community. In some cases, researchers will be asked to use iConquerMS™ data to conduct studies that arise from questions submitted by iConquerMS™ participants. All sharing of health information will be through a rigorous process approved by the iConquerMS™ Research Committee.
The health information you contribute to iConquerMS™ will have any identifying characteristics removed. It will then be joined with data from thousands of other people living with MS and, following approval by the Research Committee of research proposals, shared with qualified researchers from academic, commercial, and government entities for the purpose of conducting studies related to multiple sclerosis.
What topics will iConquerMS™ study?
There are many questions that may be answered through the use of health information from iConquerMS™. For example:
- What causes MS?
- Is MS actually more than one disease?
- Which MS treatments work best in which people?
- How helpful are factors such as diet and exercise in reducing the effects of MS?
- Can MS be prevented?
- Can someone's future experience with MS be predicted from the experiences of others?
iConquerMS™ also seeks input from those living with MS to help shape research on the topics that matter most to you. By sharing health information and ideas, you drive MS research forward.
Is participating in iConquerMS™ private and secure?
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. Only authorized personnel 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. The iConquerMS™ Project Team takes all industry-standard physical and electronic technical precautions to protect the information that you share with iConquerMS™.
Who should participate in iConquerMS™?
Everyone who cares about MS has a reason to participate.
We’ve set an initial goal of having 20,000 people living with MS participate in iConquerMS™—people from all parts of the country, all backgrounds and ethnic groups, and all ages and stages of living with multiple sclerosis. With this diversity, researchers can dive deep into the workings of MS to learn more about the condition. Participating in other data-collection initiatives does not restrict participation in iConquerMS™.
If you have not personally been diagnosed with MS, you may still join and share health data, connect with researchers, and contribute in other ways such as spreading the word about iConquerMS™, providing feedback or donating to help fund our mission to advance MS research.