About PANS Clinic & Research Program
The Stanford PANS Program was established in 2012 to provide a comprehensive program to orchestrate groundbreaking research while providing tailored care for patients and their families. The Stanford Immune Behavioral Health (formerly PANS) Clinic is the first multi-disciplinary PANS clinic in the world. The goal of our service and research is to identify infections and immune system abnormalities that may affect psychiatric symptoms.
Our Clinical Care Mission
To develop a diverse team of clinicians that can provide expertise for the many facets of this condition including experts in: autoimmunity (rheumatologists), immunodeficiency (immunologists), neurotransmitters (psychiatrists and neurologists), infectious diseases, nutrition, food intolerance, and psychology. We actively manage the care of over 400 patients, and see ~50 new patients annually, as our clinical caseload permits.
Our goal is to rapidly integrate research discoveries to improve treatment strategies.
The cornerstones of our treatment are based on understanding inflammatory contributions (infectious, autoimmune, and autoinflammatory), palliating the clinical condition as the brain heals, and integrating the most effective and expedient pathways to rehabilitate from these presumed inflammatory insults.
Our Research Mission
1. To identify molecular pathways and environmental triggers (including changes to the microbiome) in patients with PANS in order to develop therapeutics which could treat and prevent neuropsychiatric deteriorations.
2. To discover better diagnostic methods and biomarkers for recognizing PANS early, potentially before the first full episode.
3. To identify resilience and vulnerability factors and traits that are associated with PANS prognosis in order to develop interventions which enhance resilience pathways and down regulate vulnerability pathways.
To achieve these goals, we are particularly interested in investigating the role of infection in triggering/worsening the curse of PANS, how immunodeficiency and autoimmunity may be involved, and the role of vascular abnormalities and inflammation in the basal ganglia and other relevant brain areas.
We have seen over 400 patients in our clinic with over 75% of our patient cohort enrolled and participating in research. So far, we have found a variety of potential infectious and immune drivers, and have also uncovered three genetic associations that strongly point to autoimmune/inflammatory disorder. Additionally, 5-10% of our patients are found to have an immunodeficiency, 16% have an autoimmune marker, and >30% are found to have a concurrent autoimmune or inflammatory disease. Further characterization of genetic risk factors and immune deviations are being explored through collaborations with leading geneticists and immunologists.
Clinical Trials and Research Activities
We actively enroll our activated research patients into our clinical database so that we can learn about distinct patient subgroups and use the longitudinal clinical data to gather work-up treatments within each PANS subgroup. We also collect patient specimens (blood) in various disease states (flare, remission, chronic, etc.) to discover biomarkers which can help us understand the root cause of patient disease in each subgroup. In addition to blood specimens, we also collect specimen for research purposes from clinical procedures and have 20 tonsil/adenoid tissue specimens from patients and healthy controls, and 27 cerebrospinal fluid (CSF) specimens from patients. We also have approximately 100 health control participants of which we have collected clinical and biological specimens from to serve as a comparison population for research.
We have distributed over 2,743 aliquoted specimens (blood and CSF), ~24% of our banked inventory, to collaborating basic science labs at Stanford and partnering institutions (Yale, UCSF, NIMH, U of Washington-St. Louis, and U of Arizona, to name a few). We are conducting next generation analysis on patients and their families, and we are also planning to analyze specimen for microbiome data including genome subtraction techniques to look at microorganism DNA.
We have been chosen as a site for a multi-site Phase III Industry Sponsored IVIG trial and set to launch ideally in early 2022.
See Research for more details.
In the upcoming years, we would like to continue to expand our clinical team, expand our clinical database and biorepository, and seek funding for more in depth genetic analyses and immunological characterization.
For additional information, we also recommend visiting the following websites, which may be helpful to children with PANS and their primary care provider. These websites have the most up-to-date information regarding PANS:
- National Institute of Mental Health (NIMH) PANS/PANDAS
- PANS/PANDAS Physicians Network (PPN)
- Neuroimmune Foundation