The neuromyelitis optica spectrum disorder (NMOSD) registry SPHERES is now collecting biospecimens from willing patients, according to a press release from CorEvitas and The Guthy-Jackson Charitable Foundation, the sponsors of the registry.
The clinically annotated biospecimens could help develop better diagnostic methods and new treatment options for patients living with the disease.
“The launch of this biospecimen initiative offers a unique approach to understanding and treating this rare disease,” said Austin Read, vice president of precision medicine at CorEvitas. “This information will uncover deep clinical insights to develop and optimize therapy for every patient in the future, regardless of their disease phenotype.”
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More than 300 participants in the registry who have had different treatment regimens and relapse events will be approached for specimen collection. The specimens will then be paired with clinical data and offer a unique dataset for researchers.
Read more about experimental treatments for NMOSD
SPHERES (Synergy of Prospective Health & Experimental Research for Emerging Solutions in NMOSD) is the first regulatory-grade registry that focuses on understanding the impact of recently approved therapies on clinical outcomes, disease burden, and the quality of life of patients with NMOSD.
NMOSD is a rare and chronic inflammatory disease of the central nervous system with an estimated prevalence of 0.5 to 4 per 100,000 people. The clinical manifestations include bilateral optic neuritis leading to vision loss, area postrema syndrome associated with severe nausea, vomiting, and hiccups as well as narcolepsy, anorexia, abnormal diuresis, hypothermia, and hypersomnia due to diencephalon involvement and oculomotor problems, long tract signs, and ataxia caused by brainstem involvement.
The disease can be treated with high-dose corticosteroids and immunosuppressants. There are also novel therapies that have been shown to be effective in treating the disease and others being tested in clinical trials.
Reference
The SPHERES registry for NMOSD patients launches precision medicine program. News release. CorEvitas; May 4, 2023.
