Going Live Soon: Superficial Siderosis Patient Registry Website
The new Superficial Siderosis Patient Registry website will be going live in a few weeks. Living With Superficial Siderosis is partnering with The Silent Bleed and our SS community advocates to promote a patient-centered superficial siderosis registry. We envision a centrally located website where SS patients around the world can share their relevant data, geographic location, and answer a research questionnaire.
Our goal is to document this disease in real-time from diagnosed patients so researchers, clinicians, and physicians will be able to understand how superficial siderosis develops and progresses. If our community can offer stored data for use by and allow a researcher to ask questions of the registry members, we can help future development of promising therapies.
This website will be administered by Living With Superficial Siderosis during the initial building period. Our hope is as this registry grows we can apply for inclusion on the NORD server, once we meet the requirements, and migrate to their platform.