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| Name | Class |
|---|---|
| Stanford University | OTHER |
| University of California, Los Angeles | OTHER |
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The Economic Impact Study of IVIG treatment for PANS is a part of the Unhideâ„¢ Project, which is a research initiative developed by the Brain Inflammation Collaborative. Specifically, the Unhideâ„¢ 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
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| Measure | Description | Time Frame |
|---|---|---|
| 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. | Baseline |
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Inclusion Criteria:
Exclusion Criteria:
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Individuals will be recruited through social media and various online channels.
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| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Brain Inflammation Collaborative | Delafield | Wisconsin | 53018 | United States |
Brain Inflammation Collaborative (BIC) Research Collaborators selected by BIC will have access to data reports from registry participants, in keeping with criteria of the specific collaborative investigation.
Data will be available to BIC Research Collaborators as long as the study remains active, and for 7 years thereafter upon request.
BIC Research Collaborators will be selected based on mutual interest and on BIC's assessment that the Collaborator possesses knowledge, experience, ethics, and training that will benefit interpretation of registry data, and proposes a meritorious and feasible research project in line with BIC's Research Roadmap.
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| ID | Term |
|---|---|
| C537163 | Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections |
| C000631768 | Pediatric acute-onset neuropsychiatric syndrome |
| D000090862 | Neuroinflammatory Diseases |
| ID | Term |
|---|---|
| D009422 | Nervous System Diseases |
| D007249 | Inflammation |
| D010335 | Pathologic Processes |
| D013568 | Pathological Conditions, Signs and Symptoms |
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