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CTF-funded International Schwannomatosis Database Published in Medical Journal

By October 30, 2017February 27th, 2024Publications, SWN

An article about the Children’s Tumor Foundation-funded International Schwannomotosis Database that was published in a recent issue of American Journal of Medical Genetics was just added to the PubMed US National Library of Medicine, a database hosted by the National Institutes of Health that houses more than 27 million citations for biomedical literature. Schwannomatosis is the rarest of the three types of neurofibromatosis, and the International Schwannomotosis Database facilitates connections between affected individuals interested in participating in research and researchers actively investigating a variety of aspects of schwannomatosis.  The goal is to better understand the rare genetic disorder and design treatments that can begin to be tested.

The Children’s Tumor Foundation is proud to be the exclusive funder of the International Schwannomatosis Database. This article, Creation of an international registry to support discovery in schwannomatosis, establishes the registry’s design, structure, and content, and analyzes the successful execution of three research projects that benefited from the value of the ISD as a platform connecting researchers with affected individuals. The ISR serves as a tremendous asset to accelerate research in schwannomatosis and help generate interest from the pharmaceutical industry.

In addition to facilitating a means for researchers to connect with the affected community, the Children’s Tumor Foundation is also committed to funding such innovative research endeavors through the newly launched Synodos for Schwannomatosis. This consortium is the newest collaboration under the Synodos research program and aims to identify new therapeutic targets and advance the understanding and management of the disease, with a special focus on pain.

Click here to read the abstract in the American Journal of Medical Genetics.

Click here to learn more about the International Schwannomatosis Registry.

Click here to learn more about Synodos for Schwannomatosis.