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OpenTrials
Completed

NCT Number: NCT06818656

The Unhide™ Project: Economic Impact Study of IVIG Treatment for PANS

The Economic Impact Study of IVIG treatment for PANS is a part of the Unhide™ Project, which is a research initiative developed by the Brain Inflammation Collaborative. Specifically, the Unhide™ project is a collection of investigations with the overall goal of better understanding the problems with thinking and mood that can sometimes be symptoms of conditions like autoimmune disease, infection-associated chronic conditions like Long COVID, ME/CFS, PANDAS, PANS, and other illnesses. Your contribution to this research will allow us to better describe these symptoms and understand what causes them, how they develop, and how they can best be treated and prevented.

This study seeks to assess how PANDAS/PANS affects the financial well-being of families who pursue IVIG treatment, as well as the overall health and quality of life of children with the condition. By gathering data through this survey, we aim to gain important insights into the economic consequences of treating - or not treating - PANS with IVIG, including how it impacts parents' ability to work and children's ability to attend school.

Key Eligibility Criteria

* Aged 2-89, U.S. resident, fluent in English, and have access to computer and/or smartphone * Suspected or confirmed diagnosis of PANS/PANDAS * Have received IVIG OR have sought and/or been prescribed IVIG but have not received it

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Key information

Conditions

PANDAS Inflammation Nervous System Diseases Neuroinflammatory Diseases PANS PANS Pediatric Acute-Onset Neuropsychiatric Syndrome Pathologic Processes Pathological Conditions, Signs and Symptoms Pediatric Acute-Onset Neuropsychiatric Syndrome Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections

Age range

2 year–89 year

Sex eligibility

All sexes

Study type

Observational

Primary location

Brain Inflammation Collaborative

Delafield, Wisconsin, 53018, United States

Who can participate

Healthy volunteers accepted: No

Only the study team can determine whether someone qualifies for participation.

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

Treatment and study plan

Primary outcomes

  1. Economic and Quality of Life Impact of IVIG treatment

    Time frame: Baseline

    This survey asks respondents (and/or their parent/legal guardian) about aspects of IVIG treatment related to medical encounters, treatment access, financial impacts, insurance coverage, and the functional and emotional effects of PANS/PANDAS.

Sponsors and collaborators

Lead sponsor

Brain Inflammation Collaborative

Other

Collaborators

  • Stanford University
  • University of California, Los Angeles

Registry information

Important dates

Study start
2025
Primary completion
2025
Study completion
2025
First posted
Feb 10, 2025
Registry last updated
Sep 12, 2025

OpenTrials presents study information sourced from ClinicalTrials.gov. The official registry record should be consulted for the latest information.

View the official ClinicalTrials.gov record (opens in a new tab)

This listing is for discovery and informational purposes only. It is not medical advice, does not guarantee that a study is recruiting, and does not determine eligibility. Contact the study team and a qualified healthcare professional when considering participation.

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