Economic impact of IVIG treatment for PANS
The Unhide™ Project: Economic Impact Study of IVIG Treatment for PANS
This study looks at how IVIG treatment for children with PANS affects families' finances and the children's quality of life.
Quick facts
| Study type | Observational |
|---|---|
| Enrollment | 200 (estimated) |
| Ages | 2 Years to 89 Years |
| Sex | All |
| Sponsor | Brain Inflammation Collaborative Academic / other |
| Locations | 1 site (Delafield, Wisconsin) |
| Trial ID | NCT06818656 on ClinicalTrials.gov |
What this trial studies
This study is part of the Unhide™ Project, which aims to understand the economic and health impacts of IVIG treatment for Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS) and PANDAS. It gathers data from families to assess how these conditions affect their financial well-being and the overall quality of life of affected children. Participants will provide insights through surveys, contributing to a broader understanding of the implications of treatment and the condition itself.
Who should consider this trial
Good fit: Ideal candidates include individuals diagnosed with PANDAS or PANS who have either received or sought IVIG treatment.
Not a fit: Patients who have not been diagnosed with PANDAS or PANS or those who do not meet the inclusion criteria will not benefit from this study.
Why it matters
Potential benefit: If successful, this study could provide valuable insights into the economic burden of PANS and PANDAS, potentially leading to improved treatment strategies and support for affected families.
How similar studies have performed: While this study focuses on economic impacts, similar studies on the health outcomes of IVIG treatment for PANS and PANDAS have shown promising results.
Eligibility criteria
Show full inclusion / exclusion 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 * Failure to meet inclusion criteria
Where this trial is running
Delafield, Wisconsin
- Brain Inflammation Collaborative — Delafield, Wisconsin, United States (Recruiting)
Study contacts
- Study coordinator: Megan L. Fitzgerald, PhD
- Email: megan@braininflammationcollaborative.org
- Phone: 833-286-4433
How to participate
- Review the eligibility criteria above with your treating physician.
- Visit the official trial page on ClinicalTrials.gov for the most current contact information and recruitment status.
- Contact the listed study coordinator or principal investigator to request pre-screening. Pre-screening is free and never obligates you to enroll.