Making PANS/PANDAS outcomes count as evidence.
Families and clinicians in the PANS/PANDAS community record observations every day, but the field lacks structured longitudinal outcome data. PNOS-P exists to close that gap — developed by Beacon and delivered through the platform.
Why PNOS-P
PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) and PANDAS (associated with streptococcal infection) present abruptly and evolve episode by episode. Care and research both need a consistent way to record what is changing — across symptom domains, over time, and across participating sites. PNOS-P structures that record.
- Structured intake before the first assessment captures the child’s starting picture.
- Domain-level outcomes are tracked across visits rather than flattened into a single score.
- Every response is recorded against the instrument version used, so longitudinal data stays interpretable.
- Care teams review submissions through a staff-review workflow with an audit trail.
How participation works
Assessments run through the child’s care team — families begin through a physician or an enrollment invitation, not by self-enrolling into a research program. Data handling follows the platform’s consent-versioning and withdrawal rules, and a parent or guardian can request withdrawal at any time.
Caring for PANS/PANDAS patients?
Talk to us about PNOS-P and registry participation — or start a study draft if you are building one.