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The Superficial Siderosis Patient Registry is a confidential observational database of self-submitted information from individuals diagnosed with Superficial Siderosis. One goal of observational studies is to use your experiences to identify key issues for targeted research, including treatment comparisons not evaluated in clinical trials, such as over-the-counter alternatives.

By sharing your diagnostic and treatment journey, you help our investigators with the data necessary to conduct informed studies and ultimately identify improved treatment options and outcomes for the Superficial Siderosis patient.

A high priority is to document every patient’s experience over time. Our registry allows global access to patients treated by a broad base of community practitioners. Starting with your background, pre-diagnostic history, your path to diagnosis, resource utilization, workforce participation, health-related quality of life, and every patient’s opinion of their local treatment plans will be collected.

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The Global Superficial Siderosis Patient Community

Our community is patients and caregivers from around the world.

The Global Superficial Siderosis Patient Registry

Registry members enter self-reported information to create a baseline health history with scheduled updates.

Creation Of An Extensive Database

Your information is aggregated into a longitudinal dataset for research

Opportunities

Investigators, graduate or post-graduate projects are invited to become a reseach alliance partner with access to our global observational
database

Learn How

SSPR Partners

Superficial Siderosis Research Alliance

Superficial Siderosis Clinic and Research Laboratory

REDCap Consortium

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Patient Resources

Visit our information hub or join an active online SS community ready to offer support. Understand Superficial Siderosis and find the most current information

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Clinical Trials



NIH U.S National Library of Medicine
Find Trials

Published Report



Two-year observational study
of deferiprone in superficial siderosis

New Report


Treatment Response of Deferiprone in Infratentorial Superficial
Siderosis: a Systematic Review