Our mission is simple:
Find a cure.
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The International PANS Registry was launched by Pediatric Research & Advocacy Initiative (PRAI) a parent-run 501(c)(3) organization aimed at accelerating patient-centered research for families suffering from neuroimmune disorders. Thanks to an outpouring of community support, PANS parents hosted a series of 5k events that raised over $300k in three years for PANS research and education. It is their dedication and commitment to healing our children that made IPR possible.
PRAI awarded its first research grant of $75,000 to the incredible research team at Stanford PANS Clinic to investigate what role dysfunctional monocytes may play in PANS.
After having candid conversations with members of our advisory board about the barriers that prohibit PANS and PANDAS from being widely accepted, we came to the conclusion that one of the biggest hurdles to understanding the disease was the lack of large scale data.
We were advised that the fastest way to accelerate research was to provide scientists and post-docs with free data thereby encouraging labs to investigate PANS. We committed to pursuing IPR as a resource to improve quality of life for the PANS community after confirming this reality with dozens of researchers.
Across the next two years, we gathered informal data from skeptical clinicians, frustrated parents, and interested scientists to further elucidate the barriers to children getting proper diagnosis and treatment.
Through informal polling, we found that thousands of families shared clinical histories and lab markers not yet discussed in the scientific literature. It was then we became convinced that a formal data collection registry for researchers was critical to moving understanding of PANS and new treatment options forward.
After interviewing several epidemiologists, Travis Nelson, MPD, and Acting Chair of Pediatric Dentistry at the University of Washington, referred us to Erin E. Masterson, PhD, MPH. We knew immediately we had found the perfect person to lead our project. Erin’s commitment to engaging in scientifically sound research instantly impressed us. We embraced her lack of knowledge on the disease itself, knowing she would leave her bias at the door. We hired Erin and pursued our passion for creating a patient-centered research project, born out of the awe inspiring work we have seen parents accomplish when the answers were not available to them. Where skepticism and lack of research and awareness existed, parents became experts on a complex chronic illness, healing their children despite the lack of formal research to prove what they were doing was working. It is that inspiration that makes our patient-centered approach something we are most proud of.
The IPR Registry Committee, a program of Pediatric Research & Advocacy, reached out to families, non-profit organizations, clinicians, scientists, and the top experts in the country for feedback and guidance on IPR and interviewed them to find out what information they would find valuable.
IPR aims to advance PANS research through broad data sharing and ensuring the IPR database is strongly interconnected with the PANS community.
The International PANS Registry now sits at the University of Washington (UW). After speaking with several trusted advisors, we decided the most efficient way to get PANS data into the hands of researchers for study was to affiliate the Registry with an academic institution so that researchers will readily recognize and be familiar with processes around how we collect and share our data. Since Dr. Masterson works at the UW and has played such an instrumental role in the design and implementation of the IPR, we felt they were the perfect fit.
Our intent is to have IPR serve as a hub of information while keeping the family, and most importantly, the children at the center and heart of all we do. We are honored to partner with many incredible people and organizations and hope that in this process we have gained the trust of the patient community. As always, we are committed to one goal above all else—ensuring our children live whole, happy, and healthy lives. The IPR team has the deep held belief that one day all children will claim victory over PANS.
Our Board of Directors
Chair: Jessica Gavin
Vice Chair: Christina Teague
Treasurer: Amy Gregory
Secretary: Jill Lemon
A Letter from PRAI Executive Director and Registry Sponsor of IPR