Pediatric Research & Advocacy Initiative (PRAI) a parent-run 501(c)(3) organization formed in 2015 with the aim to accelerate patient-centered research for families suffering from neuroimmune disorders and increase access to care on a national scale. Thanks to an outpouring of community support, PANS parents hosted a series of 5k events, raised over $450,000 towards our life saving mission, created legislative advisory councils, paved the way for 3 major medical hospitals to building treatment centers, invited 18,000 physicians to CME lectures on PANS and made considerable progress toward a national research advisory group. We were also proud to be able to gift our first $75,000 seed grant to Stanford University PANS Clinic to investigate what role dysfunctional monocytes may play in PANS. It is their dedication and commitment to healing our children that made our work possible.

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 and this is where PRAI's charitable efforts could be best allocated.

We were advised that the fastest way to accelerate research was to provide scientists and post-docs with data thereby encouraging labs to investigate PANS. We committed to pursuing a patient-centered disease registry to gather broad scale data on this under studied condition.

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 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 and the International PANS Registry was created. We have formed a valuable partnership with The Foundation for Children with Neuroimmune Disorders, a sister organization, dedicated to improving lives for families with PANS to further our original work of education and advocacy. Our efforts are now focused solely on advancing PANS research through broad data sharing and ensuring the IPR database is strongly interconnected with the PANS community.

The International PANS Registry is now working in collaboration with 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.

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