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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.
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
NIH U.S National Library of Medicine
Two-year observational study
of deferiprone in superficial siderosis
Treatment Response of Deferiprone in Infratentorial Superficial
Siderosis: a Systematic Review