This study is closed and is no longer accepting participants.  Please stay tuned for more information about our research results.

unhide®  Project: Economic Impact Study of IVIG Treatment for PANS

Intravenous immunoglobulin (IVIG) therapy can be life-saving for those with PANDAS/PANS but health insurance denials are common. As part of the unhide® Project, the Brain Inflammation Collaborative is partnering with the project leaders pictured below to investigate the costs and benefits associated with IVIG treatment in PANS. 

ID: image of Dr. Calaprise-Whitty, Chase Harvey, and Dr. Angela Tang, study leaders.

Research Study Goal

This survey is designed to better understand the impacts of IVIG treatment on PANDAS/PANS families. We hope that the data will provide critical information about the economic implications (including parents’ ability to work and children’s ability to attend school) of treating — or not treating — PANS with IVIG. 

But, our research team needs your help to get this important data!

Who Is Eligible?

  • Ages 2-89 (Those under 18 must have a parent/legal guardian assist with the survey)
  • Have access to a cell phone, tablet or computer
  • Suspected or confirmed diagnosis of PANS/PANDAS
  • Have received IVIG OR have sought and/or been prescribed IVIG but
    have not received it

How You Can Help

We ask you to fill out a one-time survey through Qualtrics, an online survey tool. We will ask you to submit information regarding demographics, medical and IVIG history, healthcare expenditure, etc. Participation in this study should take about 30-40 minutes in total. 

To get started, please email ivig@braininflammationcollaborative.org indicating your interest in participation. 

Then, we will send you a link to access the survey!

What's In It For Me?

  • You will be contributing to critical research aimed at better understanding the costs and benefits of treating PANS with IVIG.
  • You will receive a summary of the study results, and of what the research team plans to do with the study results, once the data have been analyzed.

Help Us Spread The Word

The more participants we have, the stronger the study will be. So, please share this flyer on social media or forward this email to other PANDAS/PANS families in your network who may be interested in contributing to this important project! 

Thank you so much for your partnership in helping the next generation of PANDAS/PANS children have access to IVIG therapy.