(formerly known as Oregon MS Registry)
The Providence Multiple Sclerosis Center, in partnership with the Oregon Chapter of the National Multiple Sclerosis Society, is attempting to identify every patient with multiple sclerosis (MS) in the Pacific Northwest. We believe that this is a very important project. If successful, it will provide us with an accurate assessment of the number of patients with MS and where they are located within this region of the country. This information could be used to improve the amount and the availability of care to patients with MS.
If you agree to take part in this project, please fill out the registration form and return it to us. Once we receive your form and information 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 you with your disease. Participation is voluntary, and you will not receive payment for taking part in this registry.
Taking part, or not taking part, in the registry will have no effect on your personal care or your relationship with your health care providers. The information that you and other MS patients provide may be used for research purposes, for example, to compare the rate of MS in Oregon to other states, or differences in the rate of MS between people living in rural versus city environments. Your personal identity will not be revealed as part of any studies, nor will it be made available to insurance or other companies.
If you decide to take part, every effort will be made to protect your privacy. Instead of using your name, we will assign you a number to represent your health information. All information about you will be kept in secure, locked cabinets, and password-protected computer files. We may send additional questions for you to answer from time to time, but your privacy will always be protected. Only the MS registry researchers can access the health information you provided for research purposes, but they will not have access to your name or personal identification.
Even if you sign up now for the MS registry, you may choose not to answer any of the survey questions or even stop your participation at any time in the future. If you decide to stop taking part in the MS registry, please let us know by calling 503-216-1022. 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 Providence Multiple Sclerosis Center, 503-216-1060. You may call 503-216-1022 to request additional registration forms. If you have any questions about the use of your information for research purposes, please contact the Providence Health & Services Institutional Review Board, 503-215-6512, or the HIPAA Privacy Officer, 503-574-9123.
Our sincere thanks for your willingness to participate in this very important project.
Yours truly,
Stanley Cohan, M.D., Ph.D.
Director, Pacific Northwest Multiple Sclerosis Registry
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