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
Conditions
Keywords
Natural History Study, PANDAS, PANS, IVIG, Immunomodulatory Treatments, Quality of Life, Economic Impacts, Functional Impacts, Healthcare Resource Utilization, Neuroinflammatory Disease, Patient-Reported Outcomes, Decentralized Study, Observational
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
Interventions
None listed
Sponsors
Stanford University
University of California, Los Angeles
Brain Inflammation Collaborative
Study design
Observational model
CASE_ONLY
Time perspective
CROSS_SECTIONAL
Eligibility
Sex/Gender
ALL
Age
2 Years to 89 Years
Healthy volunteers
No
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
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Economic and Quality of Life Impact of IVIG treatment | 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. |
Countries
United States
Outcome results
None listed