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Registry Enrollment

TO: Superficial Siderosis Patient Registry Participants

FROM: Michael Levy, M.D., Ph.D., Chief Medical Advisor, SSRA, SSPR

SUBJECT: Superficial Siderosis Patient Registry Enrollment

The Global Superficial Siderosis Patient Registry is a project of the Superficial Siderosis Research Alliance (SSRA), executed by a partnership between individuals diagnosed with Superficial siderosis and the SSPR Registry Committee. The Registry’s purpose is to develop and maintain a current database of persons with Infratentorial Superficial Siderosis (iSS), Type 1, and cortical Superficial Siderosis (cSS). The database will include identifiable information that you voluntarily provide about your demographics, medical history, lifestyle, and quality of life, along with updates of your medical condition every three months. Additionally, the database will provide de-identified data to investigators for research purposes and notify patients of opportunities to participate in current and future research. These efforts may lead to a better understanding of SS and improved therapies.

Please read the following informative statements before enrolling to participate in the Superficial Siderosis Patient Registry:

You must be at least 18 years old to self-register. A physician or designated representative may enroll adults who cannot self-enroll. A parent or legal guardian may enroll children under the age of 18.

All information you provide will be for research purposes only, and your responses will be kept private and confidential.

Your personal contact information will be kept strictly confidential and will never be released without your written consent. In addition, the patient registry will never sell your personal contact information.

The REDCap (Research Electronic Data Capture) system is utilized for data collection, automatically removing all identifiable information before releasing your information to approved researchers. Researchers may use this data in publications; however, your identity will not be released.

The patient registry administrator will use your identifying information to notify you of research studies you may be eligible for; however, registry enrollment does not obligate you to participate in these additional studies.

Participation in the Registry is your choice and completely voluntary.

The Superficial Siderosis Patient Registry governing committee reserves the right to deny access to SSPR data.

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