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Frequently Asked Questions


What is the NAAMS Registry?

The National African Americans with MS Registry was developed by a group of neurologists who specialize in the care of patients with MS, and includes leading African American MS neurologists, to address the lack of studies and research that include African Americans. The goals of NAAMS Registry are to have an accurate understanding of the number of African Americans afflicted with MS, their potential barriers to care, how this relates to where the patients live, and whether certain medications are of more benefit to African Americans.

How is information about me used?

Taking part in the registry will have no effect on your relationship with your doctor. The information that you and other persons with MS provide will be used only for research purposes; for example, to compare the rate of MS between different regions, or to compare the health care available to MS patients living in rural versus urban areas. Your personal identity will not be shown as part of any reports or made available to insurance or other companies.

Who sees my information?

We will make every effort to protect your privacy. A number will be assigned to represent your information. All information about you will be kept in secure, locked cabinets and password-protected computer files. Your personal identity will not be shown as part of any reports or made available to insurance or other companies. We may send you additional surveys from time to time, but your privacy will always be protected. Only the MS Registry researchers will have access to the information you provide for the registry.

What happens once I sign up?

If you agree to take part in this project, please fill out the online registration form. Once we receive your completed form as your consent to participate, we will send you surveys to learn about you, your disease, and the medicines or services you use to help manage your disease. Participation is voluntary and you will not receive payment for participating. You are not required to answer all survey questions. Also, you may choose to stop your participation at any time. If you decide to stop taking part in the MS Registry, please notify us by using the NAAMS Registry contact information. Information that you have already provided will still be used in the registry, but no more information about you will be collected.

NAA Multiple Sclerosis Registry
9155 SW Barnes Rd Suite 317, Portland OR 97225
Phone: 503-216-6647 or 1-844-696-2666 Fax: 503-216-1039

www.naamsr.org

This site is sponsored and hosted by Providence St. Joseph Health