The Pacific Northwest Multiple Sclerosis Registry
The Providence Multiple Sclerosis Center, in partnership with the Oregon Chapter
of the National Multiple Sclerosis Society is trying to identify every person
with multiple sclerosis (MS) in the Pacific Northwest. If successful, this project
will provide a better measure of the number of people with MS and where they live
in this region of the country. The information could be used to better understand
MS and to improve the health care available to people with this condition.
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
Taking part in the registry will have no effect on your relationship with your doctors.
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.
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.
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 Pacific Northwest MS 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.
If you have any questions about the registry please contact Dr. Stanley Cohan’s office
at 503-216-1060. If you have any questions about the use of your information for research
purposes, please call the Providence Health & Services Institutional Review Board at
503-215-6512, or the HIPAA privacy officer at 503-574-9123.
Our sincere thanks for your willingness to participate in this very important project.
Stanley Cohan, M.D., Ph.D.
Director, Pacific Northwest Multiple Sclerosis Registry Project