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.
Below, 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.
Neurologists believe PANDAS/PANS affects a part of the brain called the basal ganglia. This area of the brain is responsible for motor control, executive functions, behaviors and emotions. Neurological research around PANDAS/PANS has focused on understanding how the body’s immune system attacks the brain (basal ganglia) and how it impairs the function of multiple cells—including nerve cells, the brain’s resident immune cells and blood vessels after multiple infections with group A strep. Calming this autoimmune response after infection with group A strep appears to reduce neurological and behavioral symptoms.
The above 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.
Ongoing human genetic studies in several U.S. research centers indicate that PANDAS/PANS likely affects a genetically sensitive group of children and that the mutated genes seem to regulate the immune function. These findings, in combination with studies on the animal model for the disease, indicate that PANDAS/PANS is a form of autoimmune disease that targets the brain. This line of research may provide new information on potential treatments that target inflammation and may lessen symptoms for many children affected with these disorders.
Further neurological research is needed to learn more about how PANDAS/PANS may continue to affect the normal function of some patients throughout their adolescent life and into adulthood.
Researchers are in the early stages of understanding how the immune system can affect the brain and its function. There is recent global recognition that “self-antibodies” that circulate in the blood may attack the nervous system, causing a range of disorders collectively termed “autoimmune encephalitides,” which manifest with neuropsychiatric symptoms (research is also growing at the Mayo Clinic in the U.S. and at the International Consortium at Oxford University). There is extensive evidence from research studies that these self-antibodies circulate in the blood of PANDAS/PANS children, recognize nerve cells in the basal ganglia and attack them. PANDAS/PANS researchers are studying how these antibodies enter and affect the brain.
In addition, several studies in animal models for the disease suggest that the adaptive immune system that fights infections for a long time may malfunction in this disease by entering the brain and damaging the barrier function of the blood vessels, inducing brain inflammation and impairing the function of nerve cells. The innate immune system also appears to play a key role in autoimmune encephalitides, and the prognosis of lasting remission in patients is currently being investigated.
This line of research is being conducted by several researchers that are part of the PANS Consortium. Clinicians are working to harness data to develop potential therapeutic strategies to prevent and stop the re-exacerbation of these autoimmune processes. We will continue to update this site with each new advancement in post-infectious basal ganglia encephalitis (BGE).
Because PANDAS/PANS typically presents with psychiatric symptoms, many children are considered for psychiatric interventions and not immune system malfunction.
There is growing evidence that psychiatric interventions such as cognitive behavioral therapy (CBT) and exposure and response prevention (ERP) do have a role in modulating and improving immune system function in mood disorders, including PANDAS/PANS. However, immune malfunction plays a role in PANDAS/PANS, and research is growing that points to the need to be sensitive to both psychological and immunological support.
That being said, should your child with PANDAS/PANS be evaluated and treated by a children’s psychiatrist or psychiatrist for OCD, eating disorders, mood dysregulation, tics, anxiety and more? Absolutely. Current psychiatric scientific research has shown that behavioral interventions can improve symptoms and patient outcomes. This is a complex topic, and we will continue to expand this section with family support and interventions that are being studied and are very much needed for this debilitating disease that affects everyone. Stay tuned to PANDAS Network in our fight to create lasting healing.
Looking for past information about PANDAS/PANS or the PANDAS Network? Explore the content in our research archive.
Help us continue to support the children and adults living with PANDAS/PANS.