Hidden costs of PANS: new study reveals financial toll of IVIG treatment

NCT ID NCT06818656

Knowledge-focused Sponsor: Brain Inflammation Collaborative Source: ClinicalTrials.gov ↗

First seen Jun 25, 2026 · Last updated Jun 26, 2026 · Updated 1 time

Summary

This completed study surveyed 65 U.S. families to understand the economic and quality-of-life impact of IVIG treatment for PANS/PANDAS. Researchers asked about medical visits, insurance, work absences, and children's school attendance. The goal is to shed light on the hidden costs of treating—or not treating—this condition.

What this could mean

Our plain-language read of the trial. This is informational only, not medical advice or a prediction.

Active substance: IVIG (intravenous immunoglobulin)
What this could lead to: If successful, this research could highlight the economic and social burden of PANS/PANDAS and support better insurance coverage or treatment access.
What could go wrong: This is a small, completed survey study—not a treatment trial. It measures costs and quality of life, not whether IVIG works. Results may not apply to all patients.

This is an AI summary of the original study and may miss details. Read our disclaimer.

Study facts

What this study's own registry entry says, in plain language.

Participants

65 people

The number who actually took part.

Started

Mar 2025

Finished

Jun 2025

Lead sponsor

Other sponsor

The registry's catch-all category, for sponsors it does not file as a company, a government agency, or a research network.

Who can take part

This study's own entry requirements. Only the study team can say for certain whether you qualify.

Who is studied

Individuals will be recruited through social media and various online channels.

Ages

2 to 89 years

Sex

Anyone

Healthy volunteers

Not accepted

This study is not open to healthy volunteers. The entry requirements below say who it is open to.

Show the full entry requirements

Copied word for word from the study's registry entry, so the wording is the study team's rather than ours.

Inclusion Criteria: * Individuals who who have, or have had, a healthcare provider-diagnosed or suspected diagnosis of PANDAS and/or PANS * Have received IVIG OR have sought and/or been prescribed IVIG but have not received it * Fluent in English, sufficient to communicate status via the ePRO instrument as required by the protocol * Is a U.S. resident * Access to a computer and/or smartphone and the internet, and possessing the ability to operate those devices without assistance from another person (except that children can be assisted by their parents/guardians). Exclusion Criteria: * Ward of state * Failure to meet inclusion criteria

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Conditions

The condition(s) this trial relates to.

Neuroinflammatory Diseases PANDAS pediatric acute-onset neuropsychiatric syndrome

As listed by the trial registrant

The condition terms exactly as the trial's registrant entered them.

PANDAS PANS Pans pediatric acute-onset neuropsychiatric syndrome Pediatric acute-onset neuropsychiatric syndrome Pediatric acute-onset neuropsychiatric syndrome (PANS) Pediatric autoimmune neuropsychiatric disorders associated with streptococcal infections

Hidden costs of PANS: new study reveals financial toll of IVIG treatment

What the study statuses mean