Q: I’m concerned NARCOMS is going to use my personal information to sell my name to advertisers. Is it?
A: First, NARCOMS does not sell or share your personal information to anyone outside of NARCOMS. We do not release personal information to any outside group. This is why all invitations to participate in other research studies are sent directly by us and not the outside researcher.
Second, NARCOMS is a non-profit, free registry, sponsored by the Consortium of MS Centers. Any information provided to researchers using data collected through NARCOMS is de-identified (does not include your name or personal contact information). All data are secure and access to even de-identified data sets is provided only under binding legal agreements.
Finally, your personal information is always kept confidential. The Data Coordinating Center is under the observation of its Institutional Review Board (IRB), which approves any and all questionnaires before we can send them to you. The IRB also reviews the entire project, and our approaches to protecting the privacy of data, at least once every year.
Q: Why did NARCOMS recently ask me about my internet habits and where I get my medical information?
A: That set of questions is from a national survey called Health Information National Trends Survey (HINTS) developed by the National Institutes of Health. The purpose was to provide insight into health information–gathering in general, and specifically relating to MS. Little is known about MS information preferences and the availability of information on MS.
Asking about where you get your medical information tells us about your access to online resources for MS and will help us serve NARCOMS participants more effectively.
Q: Why do you ask about lifestyle choices that do not seem to be related to my MS, such as smoking & drinking alcohol?
A: We ask about lifestyle choices to determine how these factors may be associated with MS and the severity or progression of the disease.
See “MS Reflections” for
information about smoking & MS.
We enjoy hearing from you. If you have a question or comment, please
email MSregistry@narcoms.org or call toll free at 1-800-253-7884.