Imagine If Research Could
- Slow or eventually stop the progression
- Discover a way to healing
- A Future where Superficial Siderosis is no longer life altering
Superficial siderosis research can build knowledge and speed up access to better symptom management therapies
The SSRA $100,000 Four-Year Funding Commitment to the Superficial Siderosis Clinic and Research Laboratory
$55,000 in funding delivered as of February 2021
A Rising Global Diagnosis
A Superficial Siderosis Patient Registry Report
A new report on leading patient-centric research for this rising global diagnosis. Review the 2021-2022 global funding landscape and the most current Superficial Siderosis patient demographic statistics.
Developing new therapies for a small population rare disorder is challenging. Funding concerns force hard decisions.
Discover innovative interventions meant to address the worst symptoms, bringing a potential improvement to the
quality of life, search for a cure? Researchers are faced with extensive regulatory requirements and the need to
address viewpoints from healthcare payers, care providers, and patients regarding the efficacy and long-term safety
of all new therapies. For this reason, the traditional clinical trial model needs to be redesigned to meet the needs of a
small global population. Patient registries must modernize the ability to collect data, develop real-world evidence,
distribute, and share the information, and keep pace with development and regulatory needs.
advisory groups can amplify the patients’ voices and shape the research agenda towards the needs of those who
matter. The Superficial Siderosis Patient Registry is a global patient and caregiver-led effort designed to connect our
community members from every corner of the world.
Sponsored Superficial Siderosis Research Projects
- Therapetic Antioxidant Study (Funding Stage)
- Three year study length
- Recruiting 50 Participants (TBA)
- $260,060 Total Budget
- Antioxidants $25,300
- Pharmacy Services $45,000
- Institutional $90,500
- Research $99,260
- $7,8000 earmarked antioxidant donations contributed to date (updated 05/21)
- NIH Funding Application
Michael Levy MD, PhD
Research News and Projects
The Superficial Siderosis Clinic and Research Laboratory (617) 726-7565
15 Parkman St.
Boston, Ma 02129
Recent Published Literature
- Neuropsychological and neuroimaging characteristics of classical superficial siderosis Chan, et al. April 2021
- Treatment Response of Deferiprone in Infratentorial Superficial Siderosis: a Systematic Review Martin et al. Nov 2020
- Superficial Siderosis: A Clinical Review Kumar April 2021
- The Cerebellar Cognitive Affective/Schmahmann Syndrome: a Task Force Paper. Argyropoulos et al Sep 2019