A multinational committee ensures patient-focused superficial siderosis research through diverse medical and personal perspectives.Research Planning Committee
An expert panel guiding medical research and superficial siderosis healthcare policies.Medical and Scientific Advisory Board
Massachusetts General Hospital
The Superficial Siderosis Patient Registry connects our patient community to a centralized data repository worldwide. 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 2022 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 adequate participants are 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.
Neuropsychological and neuroimaging characteristics of classical superficial siderosis Chan et al. April 2021
Superficial Siderosis: A Clinical Review Kumar April 2021
The Cerebellar Cognitive Affective/Schmahmann Syndrome: a Task Force Paper. Argyropoulos et al. Sep 2019
Cochlea Implantation in Patients with Superficial Hemosiderosis. Artukarslan et al November 2021
Olfactory dysfunction is common in classical infratentorial superficial siderosis of the central nervous system Kharytaniuk et al. August 2022