The SSRA Promise

Research is a team effort.

It requires the combined efforts

of leaders, specialists,

patients, and advocates

to advance.

The SSRA is dedicated to

obtaining financial support

through donations and grants,

offering administrative assistance,

and propelling the research forward.

Help Fund A Better Future

Brain Tissue Donation

Support posthumous brain tissue donations to advance superficial siderosis research.

Learn More Enroll Now

SSRA Projects

A multinational committee ensures patient-focused superficial siderosis research through diverse medical and personal perspectives.

Research Planning Committee

Our Medical Experts

An expert panel guiding medical research and superficial siderosis healthcare policies.

Medical and Scientific Advisory Board

$100,000 Research Award

Thanks to our generous donors the SSRA has completed its first funding pledge to the Superficial Siderosis Clinic and Laboratory.

The Superficial Siderosis Clinic and Research Laboratory

Massachusetts General Hospital

professor david werring brain sciences — **Sue Dempsey, Dr. Michael Levy, Kyle Dempsey, Mackenzie, Gabriela Romanow, and Joe Dempsey**

**UCL Queen Square Institute of Neurology**
**London**
**David Werring**
**Professor of Clinical Neurology and Honorary Consultant Neurologist at the Stroke Research Centre, UCL Queen Square Institute of Neurology, and the National Hospital for Neurology and Neurosurgery**

The Patient Perspective

A Superficial Siderosis Patient Registry Report

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.