Neuromyelitis Optica Spectrum Disorder (NMOSD)

What is Neuromyelitis Optica Spectrum Disorder (NMOSD)?
Neuromyelitis optica spectrum disorder (NMOSD), also known as Devic disease, is a chronic disorder of the brain and spinal cord dominated by inflammation of the optic nerve (optic neuritis) and inflammation of the spinal cord (myelitis). More information about FOP may be found on the NIH’s website.

What is the prevalence of Neuromyelitis Optica Spectrum Disorder (NMOSD)?
The prevalence of NMOSD is approximately 1-10 per 100,000 individuals.

How is Neuromyelitis Optica Spectrum Disorder (NMOSD) diagnosed?
A diagnosis of NMOSD is made based upon a detailed patient history, a thorough clinical evaluation, identification of characteristic physical findings, and a variety of specialized tests. More information about how NMOSD is diagnosed may be found here: https://rarediseases.org/rare-diseases/neuromyelitis-optica/#:~:text=Neuromyelitis%20optica%20spectrum%20disorder%20(NMOSD,the%20spinal%20cord%20(myelitis).. 

Is there any specific gene/pathway in Neuromyelitis Optica Spectrum Disorder (NMOSD) that has been identified?
NMOSD is most often associated with brain syndromes associated with a positive test for aquaporin-4 autoantibodies (AQP4-IgG). An in-depth scholarly article on the subject may be found here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6454358/. 

How is Neuromyelitis Optica Spectrum Disorder (NMOSD) treated?
In 2019, Soliris (eculizumab) was approved by the U.S. Food and Drug Administration (FDA) for the treatment of NMOSD in adult patients who are anti-aquaporin-4 (AQP4) antibody positive. In 2020, Uplinza (inebilizumab-cdon) and Enspryng (satralizumab-mwge) were approved for the treatment of NMOSD in adult patients with the same AQP4 antibody. More information on treatment may be found here: https://rarediseases.org/rare-diseases/neuromyelitis-optica/#:~:text=Neuromyelitis%20optica%20spectrum%20disorder%20(NMOSD,the%20spinal%20cord%20(myelitis). 

Are there any clinical trials underway for Neuromyelitis Optica Spectrum Disorder (NMOSD)?
The National Institutes of Health (NIH) has completed 8 clinical trials for NMOSD. Currently, there are 15 clinical trials underway for the condition. More information on future studies and patient recruitment can be found here: https://clinicaltrials.gov/ct2/results?recrs=&cond=NMOSD&term=&cntry=&state=&city=&dist= 

How can RareShare be helpful to Neuromyelitis Optica Spectrum Disorder (NMOSD) patients and families?
The NMOSD Rareshare community has 11 members. There are currently 5 active discussions underway. New discussions can help to connect patients, health workers, caregivers and families interested in NMOSD and provide them continual access to community resources.

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