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

Brain Inflammation Collaborative65 enrolled

Overview

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

Study Type

OBSERVATIONAL

Enrollment

Conditions

PANDAS PANS PANS Pediatric Acute-Onset Neuropsychiatric Syndrome Pediatric Acute-onset Neuropsychiatric Syndrome (PANS)

Eligibility

Sex: ALLMin age: 2 YearsMax age: 89 Years

Medical Language ↔ Plain English

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

Outcomes

Primary Outcomes

Economic and Quality of Life Impact of IVIG treatment

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.

Time frame: Baseline