Superficial Siderosis Research

The Superficial Siderosis Patient Perspective

A Superficial Siderosis Patient Registry Report

The Superficial Siderosis Patient Registry connects our patient community from every corner of the world to a centralized data repository. Without the patient and caregiver’s input, it becomes impossible to shape a research agenda to address the needs of those affected daily. Small population patient registries must prioritize the capability to collect patient data to provide real-world evidence for research planning while keeping pace with study development and multiple governments’ regulatory needs.

The superficial siderosis patient community has met the challenge through their willingness to share their journey. Patient registry members contributed meaningful data in 2021 by supporting researcher requests for participation in their projects, allowing their data to help shape three research projects the Superficial Siderosis Research Alliance will sponsor, and allowing compiled statistics to be used with applications of funding opportunities. This willingness to contribute ensures that adequate participants will be available for clinical trials and observational studies.

Our knowledge and understanding of superficial siderosis are fluid and ever-evolving. With three recognized subvariants of superficial siderosis, it remains crucial that clinicians are aware of the most recent data. In addition to symptom frequency, the 2022 Superficial Siderosis Patient Registry report focuses on patient member perspectives on real-world clinical care practices and overall satisfaction with their care plans.