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Synodos for Schwannomatosis Data Release

A multi-year effort to better understand the landscape of schwannomatosis with the end goal of developing effective treatments, funded by the Children's Tumor Foundation Synodos initiative and led by Dr. Gelareh Zadeh and Dr. Laura Papi, was recently published in Acta Neuropathologica. Experts from institutions spread across four different countries worked together to develop a clinically annotated schwannomatosis biobank, establish the genomic and epigenomic landscape of schwannomatosis to identify disease-driving alterations and correlate the molecular findings with key clinical parameters.

Along with the publication, a comprehensive data resource including whole genome, whole exome, RNA sequencing, and methylation data have been made available to the research community. Visit the NF Data Portal to learn more about this study, and to explore and request permission to access the largest data resource to date on schwannomatosis.

Conceived and funded by the Children’s Tumor Foundation, Synodos for Schwannomatosis is a $1.0 million, two-year collaborative effort of basic, translational, and clinical researchers to find solutions to the unique problems that affect schwannomatosis patients in the fastest, most efficient manner by sharing their real-time data and results. 

Watch video interviews of the Synodos for Schwannomatosis leaders and learn more about the goals of the effort here.

Click here to read the NF News cover story about the generous donation made by Richard A. Horvitz and Erica Hartman-Horvitz to underwrite this initiative.