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PANDAS/PANS Clinical and Scientific Research

PANDAS/PANS is a relatively new syndrome that is often missed in diagnosis; therefore, research into the disease is essential to raise awareness and improve outcomes for PANDAS/PANS patients and their families. PANDAS Network has actively participated in supporting PANDAS/PANS research since 2009. We work with world-class researchers to expand our knowledge about proper diagnosis and treatment for all patients and to formally recognize PANDAS/PANS as a form of autoimmune brain disease.

The etiology of PANDAS/PANS grew from recognition of a 19th-century disorder called Sydenham’s chorea, where repeated infections with group A strep caused profound neurological and body movement abnormalities termed “chorea,” and to a lesser extent recognized psychological changes. In the 1990s, PANDAS/PANS was identified as a separate disease entity because of the more profound, acute and dramatic mental health changes that result from infections with group A strep. The current research published in 2020 by U.S. researchers from Columbia, Yale and Stanford indicates that Sydenham’s chorea, PANDAS and PANS are forms of post-infectious basal ganglia encephalitis (BGE), meaning inflammation of the basal ganglia after an infection. 

The video shows the latest scientific research on how the blood vessels of the brain that normally form a blood–brain barrier to prevent immune cells and antibodies from getting inside the brain may be damaged due to peripheral inflammatory and immune processes arising after multiple group A strep infections.

Here, we summarize cutting-edge research in the area of neuro-psycho-immunology that is trying to address how the brain, mind and immune system are affected by the disease and how they interconnect with one another. Our researchers and doctors persist because early diagnosis and treatment are showing promising outcomes and helping children live happy, healthy lives.