De-identified Clinical Dataset of Pediatric PANS and PANDAS: Comorbidities and Symptom Severity (2015–2025)
Description
This study examined whether children diagnosed with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) commonly have additional psychiatric conditions and whether these conditions are linked to greater symptom severity at diagnosis. We also explored whether age or sex was related to symptom burden. The dataset includes cleaned, fully de-identified information from 265 unique children aged 3–18 years who were diagnosed with PANDAS (n = 149) or PANS-only (n = 116) at a private outpatient pediatric clinic in Utah between 2015 and 2025. Data were gathered retrospectively from electronic medical records using standardized review procedures. The shared dataset contains demographic information, diagnostic classification, documented psychiatric comorbidities (including attention-deficit/hyperactivity disorder, depression, and autism spectrum disorder), and baseline symptom severity measures. Obsessive–compulsive symptom severity at presentation was measured using the Children’s Yale–Brown Obsessive-Compulsive Scale (CY-BOCS). Overall neuropsychiatric symptom burden was assessed using a standardized PANS/PANDAS symptom severity scale. All symptom severity values are based on parent-reported assessments recorded at the initial clinical visit. The data show that psychiatric comorbidities are common among children with PANS and PANDAS, occurring at rates higher than those typically reported in the general pediatric population. Attention-deficit/hyperactivity disorder (ADHD) was frequently observed but was not strongly associated with greater obsessive–compulsive symptom severity at onset. Older age at diagnosis was modestly associated with higher symptom severity, while sex was not meaningfully related to clinical presentation. These findings suggest that PANS and PANDAS are complex conditions involving broad neuropsychiatric symptoms rather than isolated obsessive–compulsive features. The dataset may be used to explore patterns of comorbidity, relationships between demographic factors and symptom severity, and to generate hypotheses for future longitudinal or mechanistic studies. Because the data come from a referred clinical population, results should be interpreted as descriptive and not representative of all children with these conditions.
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Steps to reproduce
This study used a retrospective cohort design based on a cleaned, de-identified dataset derived from electronic health record (EHR) data from a single private outpatient pediatric clinic in Utah. The dataset contains only de-identified clinical variables and includes unique patients aged 3–18 years diagnosed with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) or Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections (PANDAS) between 2015 and 2025. No protected health information or raw EHR records are included. All dates have been generalized to the first day of each month and only reflect Month and year. Eligible patients were identified using a combination of ICD-10 diagnostic codes, clinician diagnostic documentation, and narrative clinical notes during the original chart review. Patients were categorized into mutually exclusive diagnostic groups: (1) PANDAS, defined by acute onset obsessive–compulsive symptoms or tics temporally associated with Group A Streptococcal infection, and (2) PANS-only, defined by fulfillment of PANS criteria without evidence supporting PANDAS. Patients with alternative primary neurologic diagnoses, insufficient documentation, or symptoms better explained by other conditions were excluded prior to dataset creation. The final dataset includes demographic variables (age at diagnosis, sex), diagnostic classification (PANDAS or PANS-only), psychiatric comorbidities (attention-deficit/hyperactivity disorder, depression, autism spectrum disorder), and symptom severity measures. Obsessive–compulsive symptom severity at presentation was assessed using the Children’s Yale–Brown Obsessive-Compulsive Scale (CY-BOCS), and global neuropsychiatric symptom severity was measured using a standardized PANS/PANDAS symptom severity scale. All symptom severity values are based on parent-reported measures recorded at initial clinical evaluation. Data cleaning and quality control were completed prior to repository upload and included verification of one record per unique patient, range and consistency checks, and removal of confirmed data-entry errors. The shared dataset represents the final analytic dataset used in the manuscript. Statistical analyses were conducted using IBM SPSS Statistics (version 29.0). Categorical variables were summarized as counts and percentages, and continuous variables as medians and interquartile ranges due to non-normal distributions. Between-group comparisons were performed using Mann–Whitney U tests with Hodges–Lehmann median difference estimates and 95% confidence intervals calculated when appropriate. Associations between age and symptom severity were evaluated using Spearman’s rank correlation coefficients. All tests were two-tailed with a significance threshold of α = 0.05.
Institutions
- Michigan State University College of Osteopathic MedicineMI, East Lansing