Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)
This spreadsheet has been populated with information that this research was able to obtain. A small data set of self-reports from 700 families has been used to provide estimates as this is a rare disease. The onset age prevalence, mentions of some centers of excellence, and various aspects of the disease are provided below, together with the research strategies for the parts of the question that were not answered.
The research strategies we attempted in search of relevant information to populate the spreadsheet are outlined below.
First, we searched through US government health-commissioning databases and websites as well as global organizations for any study or research that may have been mentioned. These sites include WHO, NIH, ClinicalTrials, and NCBI reports. Unfortunately, we only found descriptive information about PANS, its symptoms, causes, and treatments. We used the findings to populate the "treatment" column.
Our second strategy involved consulting several research studies and medical sources such as Researchgate.net, OMICS International, Stanford Medicine, and Psychiatric Advisor. We searched for any publicly available report of PANS within the past 5 or 10 years. However, we could not find any relevant information on the same. The only information we captured from one source stated that there hasn’t been a large population study on the incidence of PANS or PANDAS but they were able to estimate the US prevalence of the disease at one in 200 children. The statistics provided on this site were based on 700 family self-reports. Because this disease is rare, we used this data to populate the spreadsheet.
Our third strategy involved searching through PANS associations for any treatment protocols in development, centers of excellence, and diagnostic guidelines. While on the center of excellence, we searched for hospitals and research facilities taking the lead on treatment of PANS. This research revealed Pace Foundation, a nonprofit based in Arizona and is geared toward improving the diagnosis and treatment of patients with this condition and CPAE Center of Excellence as one of the clinical services in the University of Arizona health sciences that "implements an integrated model of basic science and clinical research, clinical care, and education to address a spectrum of neuropsychiatric disorders that are often misdiagnosed, under diagnosed, or undiagnosed in children." Using the information acquired here, we populated the "Excellence Centers" column.
This research could not provide global data for PANS incidence because this is a rare disease and there are limited studies that have been conducted. Nonetheless, the research was able to determine different aspects of the disease prevalence and basic information on the centers of excellence. The data of these findings are provided below, and in this spreadsheet as well.
PEDIATRIC ACUTE-ONSET NEUROPSYCHIATRIC SYNDROME (PANS)
The PANS disease is "a condition defined by sudden onset of obsessive-compulsive symptoms and/or severe eating restrictions, along with at least two other cognitive, behavioral, or neurological symptoms."
PANS describes all OCD cases that consist of acute-onset cases while PANDAS are PANS cases that have streptococcal infections. When comparing the two, PANS is the general umbrella while PANDAS is one specific part under it. To understand this better, PANS is like Cancer as PANDAS is like Leukemia. Typically, PANS symptoms begin at childhood.
CURRENTLY AVAILABLE TREATMENTS
The type of treatment recommended is highly dependent on various factors: the symptoms, severity of the condition, and if identifiable, the cause. When analyzing the symptoms, the one that most severely affects the day to day of an individual may determine the type of treatment one will receive.
These are the current available treatment of PANS:
1. Use of Psychiatric medications to treat specific symptoms, psychotherapy, and supportive interventions.
2. Antibiotics to treat any underlying infections or inflammations.
3. Immunotherapy or anti-inflammatory therapy may be critical in ensuring the stability of the immune system.
CENTERS OF EXCELLENCE
The Children's Postinfectious Autoimmune Encephalopathy (CPAE) Center of Excellence at the UA Steele Center partnered with Banner-University Medicine and the NIH/NIMH to implement an "integrated model of basic science and clinical research, clinical care and education to address a spectrum of neuropsychiatric disorders that are often misdiagnosed, underdiagnosed or undiagnosed in children." Pace Foundation is a nonprofit organization in Arizona that aims to improve the diagnosis and treatment of patients with PANS.
Dr. Susan E. Swedo, M.D., FAAP, chief of the Pediatrics and Developmental Neuroscience Branch at the National Institute of Mental Health (NIMH) stated that there is no incidence data on PANS yet. She estimates that the disorder impacts about 1% of elementary school-aged children and this is likely under diagnosed. PANDAS Physicians Network (PPN) maintains a diagnostic algorithm on its website as well as treatment guidelines.
In the US, there is a prevalence conservative estimate of 1 in 200 children, however, the true lifetime prevalence of PANDAS or PANS is not known. In the US, approximately 500,000 children under 18 have OCD. Based on an analysis of 700 family self-reports, 4 to 9 years has the highest age onset with 69%. During primary symptoms, the OCD is at 37% and TICS has 14% with both combined percentage of 49%. The PANDAS/PANS population demographic shows that overview has young age onset of Tics is 6.5 years with an allowance of two years, and 7.4 years with a two-year allowance for OCD. For those over eight years old, the ratio for boys to girls is 2.6:1; while those below, the ratio of boys to girls is 4.7:1.