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

NCT ID: NCT06818656

Last Updated: 2025-09-12

Basic Information

• Recruitment Status: COMPLETED
• Total Enrollment: 65 participants
• Study Classification: OBSERVATIONAL
• Study Start Date: 2025-03-01
• Study Completion Date: 2025-06-19

Brief Summary

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

Conditions

PANDAS; PANS; PANS Pediatric Acute-Onset Neuropsychiatric Syndrome; Pediatric Acute-onset Neuropsychiatric Syndrome (PANS); Pediatric Acute-Onset Neuropsychiatric Syndrome; Pediatric Autoimmune Neuropsychiatric Disorders Associated With Streptococcal Infections

Study Design

• Observational Model Type: CASE_ONLY
• Study Time Perspective: CROSS_SECTIONAL

Eligibility Criteria

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

• Minimum Eligible Age: 2 Years
• Maximum Eligible Age: 89 Years
• Eligible Sex: ALL
• Accepts Healthy Volunteers: No

Sponsors

Stanford University

OTHER

Sponsor Role: collaborator

University of California, Los Angeles

OTHER

Sponsor Role: collaborator

Brain Inflammation Collaborative

OTHER

Sponsor Role: lead

Responsible Party

Responsibility Role: SPONSOR

Locations

Brain Inflammation Collaborative

Delafield, Wisconsin, United States

Countries

United States

Other Identifiers

BIC-2025-01

Identifier Type: -

Identifier Source: org_study_id