FAQs About MS Research and the Power of Health Data
Why is iConquerMS™ needed?
The iConquerMS™ initiative enables the collection of extremely large amounts of information required for research, and research is essential for answering key questions about MS. Unlike other data-gathering projects, iConquerMS™ is driven by individuals with MS, and is informed by their input and ideas. iConquerMS™ is also important because it is among the first examples of a ‘large-scale approach’ to research, an approach many believe is essential to tackle the complexities of disease effectively.
Why should I participate in iConquerMS™?
iConquerMS™ will only succeed if thousands of people living with MS participate. It is centered around those living with the disease and depends on their participation. You will not be excluded based on what kind of MS you have, your level of disability, or what other conditions you may have. In addition, iConquerMS™ relies on those with MS not only to contribute their health information, but to provide their ideas for research topics and questions to move research in directions that are important to them. That means that as a participant, you'll have the power to influence what types of research are conducted through iConquerMS™. The bridge between researchers and those with the disease is a key feature and benefit of participation.
What kinds of questions might iConquerMS™ help answer?
There are many questions that may be answered through the use of health information from iConquerMS™. For example:
- What causes MS, and is MS actually more than one disease?
- What factors affect disease activity in MS?
- Which MS treatments work best in which people?
- How helpful are things like diet and exercise in reducing the effects of MS?
- Can MS be prevented?
- Is it possible to predict someone's future experience with MS based on a person's past experience of MS or the experiences of others?
How much data do you need from me, and how much is ‘enough’?
The more information you can contribute about your MS experience the better!
Also, the iConquerMS™ initiative will evolve as research advances. Our research questionnaires will vary in the future: some will be short because only a few answers are needed; others will be more comprehensive, as needed for research. Your continued commitment to providing information is essential. In turn, we commit to keeping you up to date on how iConquerMS™ is contributing to research.
How many people with MS do you need?
In order to address a wide range of research questions, we need thousands to tens of thousand of people affected by MS as participants. We also welcome participants who are not affected by MS for comparison purposes. Because MS is so varied, it’s also important to include diverse individual experiences.
One person can ask an important research question, but information from thousands of individuals may be needed to answer that question. An example of that can be found in heart disease, where important healthcare advances have been made through the analysis of data from thousands of people.