There is no greater force than the sense of urgency you experience when diagnosed with Superficial Siderosis. This ultra-rare neurodegenerative disorder affects less than one in three million persons worldwide.
The Superficial Siderosis Research Alliance’s mission is to educate, advocate, and raise funding for Superficial Siderosis research and associated symptoms of ataxia, hearing impairment, and myelopathy.
SSRA activities fund the Superficial Siderosis Patient Registry.
Michael Levy MD, PhD
Dr. Levy is a neurologist with 12 years of clinical and research expertise in rare neuroimmunological disorders. This Houston, Texas native earned his medical degree from Baylor College of Medicine. He then completed his residency in the Johns Hopkins neurology program in 2005, a fellowship in neuroimmunology in 2008, was a faculty member at Johns Hopkins University since 2009 and was the Director of the Johns Hopkins Neuromyelitis Optica Clinic.
Dr. Levy is the Chief Medical Advisor of the SSPR and SSRA, Director, SS Clinic and Research Laboratory, Director, NMO Clinic and Research Laboratory, Research Director, Division of Neuroimmunology & Neuro infectious Disease at Mass General Hospital, Boston MA.
The REDCap project began in 2004 at Vanderbilt University. It initially supported a small group of clinical researchers who needed a secure data collection tool that met HIPAA compliance standards. REDCap quickly became their go-to method for keeping both single and multi-site research studies.
REDCap’s developers firmly believed that nobody could know the research as well as the researcher. So a user-friendly web-based interface was introduced to put the researchers in total control of their work. No background knowledge or technical experience was needed to use REDCap; researchers could directly manage their own projects whenever and however they wished, through any browser on any device.
Vanderbilt was now able to invest minimal institutional resources yet still safely and reliably support an increasing number of research studies in REDCap. They explored ways to disseminate the now mature software and foster broader collaboration for future development.
In 2006, the REDCap consortium officially launched. The consortium began as a handful of non-profit organizations interested in expanding REDCap’s functionality through collaborative software development. Each partner site was given access to the codebase to install their own REDCap system and offer it to their researchers as Vanderbilt had done for its own clinical researchers.
The Superficial Siderosis Research Alliance is a REDCAP Consortium member.