COMPLETED

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

Study Overview

This clinical trial focuses on testing the efficacy of different digital interventions to promote re-engagement in cancer-related long-term follow-up care for adolescent and young adult (AYA) survivors of childhood cancer.

Description

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

Official Title

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

Quick Facts

Study Start:2025-03-01
Study Completion:2025-06-19
Study Type:Not specified
Phase:Not Applicable
Enrollment:Not specified
Status:COMPLETED

Study ID

NCT06818656

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

Ages Eligible for Study:2 Years to 89 Years
Sexes Eligible for Study:ALL
Accepts Healthy Volunteers:No
Standard Ages:CHILD, ADULT, OLDER_ADULT
Inclusion CriteriaExclusion Criteria
  1. * Individuals who who have, or have had, a healthcare provider-diagnosed or suspected diagnosis of PANDAS and/or PANS
  2. * Have received IVIG OR have sought and/or been prescribed IVIG but have not received it
  3. * Fluent in English, sufficient to communicate status via the ePRO instrument as required by the protocol
  4. * Is a U.S. resident
  5. * 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).
  1. * Ward of state
  2. * Failure to meet inclusion criteria

Contacts and Locations

Study Locations (Sites)

Brain Inflammation Collaborative
Delafield, Wisconsin, 53018
United States

Collaborators and Investigators

Sponsor: Brain Inflammation Collaborative

Study Record Dates

These dates track the progress of study record and summary results submissions to ClinicalTrials.gov. Study records and reported results are reviewed by the National Library of Medicine (NLM) to make sure they meet specific quality control standards before being posted on the public website.

Study Registration Dates

Study Start Date2025-03-01
Study Completion Date2025-06-19

Study Record Updates

Study Start Date2025-03-01
Study Completion Date2025-06-19

Terms related to this study

Keywords Provided by Researchers

  • 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

Additional Relevant MeSH Terms

  • 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