Sumaira Ahmed, Founder and Executive Director of The Sumaira Foundation, discusses her organization and the BEST-NMOSD clinical trial for patients with neuromyelitis optica spectrum disorder (NMOSD).
NMOSD is a rare autoimmune disorder that largely affects the spinal cord and optic nerves. Symptoms include pain, weakness, bowel and bladder problems, and temporary vision loss. NMOSD usually occurs in adulthood, but symptoms may start at any age. Some people have a single attack of symptoms lasting months, but in most people the symptoms come and go over time. People with NMOSD may develop permanent muscle weakness and vision loss.
The Sumaira Foundation is an international patient-led advocacy organization focused on rare neuroinflammatory and related disorders. Starting in NMOSD, the foundation now also works in MOGAD, autoimmune encephalitis, stiff person syndrome, myasthenia gravis, chronic inflammatory demyelinating polyneuropathy (CIDP), neurosarcoidosis, and CNS vasculitis. The organization aims to raise awareness, educate patients, lead clinical research, build community, and advocate for patients.
Ms. Ahmed describes the excitement around the BEST-NMOSD multicenter, phase 4 trial that is enrolling 540 patients internationally, comparing rituxamab to complement inhibitors, inebilizumab and satralizumab (CIS) in patients with AQP4-IgG-positive NMOSD.
Adults with seropositive NMOSD meeting 2015 IPND criteria are randomised to rituximab or pooled CIS, then to complement inhibitors (ravulizumab, eculizumab), inebilizumab, or satralizumab. The primary endpoint is time to adjudicated relapse and time to protocol-defined safety or tolerability failure. Secondary outcomes include Expanded Disability Status Scale (EDSS), Multiple Sclerosis Functional Composite (MSFC), treatment satisfaction, vision-related quality of life, pain, depression and fatigue.
The first patient was enrolled March 1st, 2025. No clinical outcome data are yet available. More data is expected to be presented at other conferences this year.
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To learn more about NMOSD and other rare neurological conditions, visit https://checkrare.com/diseases/neurology-nervous-system-diseases/