Synodos for NF2

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At a Glance
  • Status: Active Consortium
  • Year Launched: 2016
  • Initiating Organization: Children’s Tumor Foundation
  • Initiator Type: Nonprofit foundation
  • Rare disease
  • Disease focus:
    Neurofibromatosis
  • Location: North America

Abstract

Neurofibromatosis Type 2 (NF2) is characterized by tumors that develop throughout the central and peripheral nervous system. Though NF2 tumors are benign, these patients experience significant morbidity and mortality because of the location of the tumors, their compressive effects, and the effects of current treatments. Synodos for NF2 is a $3 million, multi-year initiative that has assembled a team of researchers from twelve world-class labs and medical centers. This comprehensive, collaborative model brought together experts in basic, translational, and clinical research, who have joined forces to share information, free of bureaucratic obstacles and institutional competition.

Mission

The goal of Synodos for NF2 is to discover novel therapeutic agents for clinical treatment, that either successfully shrink NF2 tumor types, or halt tumor growth without long-term toxicity, or with a manageable long-term toxicity profile. Synodos for NF2 aims to deliver multiple new and advanced cell and animal models to accelerate drug screening, new target pathways, and an increased understanding of response and resistance to treatment. Eventually this work will result in new clinical trials for NF2, and effective combination therapies.

Consortium History

Synodos was born from the Children’s Tumor Foundation’s dissatisfaction with the scientific research process.  It models an approach that promotes data sharing and collaboration rather than data hording and competition so as to more efficiently and quickly accelerate the cancer research process.

Structure & Governance

Developed by the Children’s Tumor Foundation

Financing

Funded by the Children’s Tumor Foundation

Patient Engagement

The consortium recruits patients for testing of clinical trials 

Points of Contact

Salvatore La Rosa, PhD
slarosa@ctf.org
120 Wall Street, 16th Floor
New York, NY 10005

Sponsors & Partners

Children’s Tumor Foundation

Washington University

German Cancer Research Center

University of California SF

Children’s Hospital of Philadelphia

University of Minnesota

Cincinnati Children’s Hospital

National Cancer Institute

Recombinetics, Inc.

University of Iowa

Sanford School of Medicine

Exempler Genetics

University of Florence

University of Toronto

Last Updated: 06/27/2017
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