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Synodos: An Historic New Initiative in Neurofibromatosis Research

Published: Tuesday, March 11, 2014
Last Updated: Tuesday, March 11, 2014
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The Children’s Tumor Foundation announce Synodos, a first-of-its-kind initiative dedicated to defeating the rare genetic disorder neurofibromatosis type 2 (NF2).

This unique consortium brings together a multidisciplinary team of scientists from twelve world-class labs at academic and medical centers of excellence, who have pledged to work closely together – sharing information, datasets, results and more – at every step in research development, with the goal of speeding up the drug discovery process.

This group of talented researchers come from varying backgrounds – from basic science, to translational science, to clinicians – and have joined together in order to break down the barriers that have traditionally inhibited collaboration. Synodos represents a move from the traditional trial-and-error efforts of the past, and reflects a desire from all involved to enable the most promising NF research, and to accelerate treatments.

The term synodos comes from the grouping of two ancient Greek words: syn and odos, which when combined mean ‘to work together on the same path’. This spirit of likeminded purposefulness has for the first time brought together NF researchers in an effort modeled after the much-acclaimed ‘Stand Up To Cancer’ initiative. Participants have agreed to work together in a transparent and collaborative manner.

“Synodos brings together the brightest minds in the NF field, and beyond, in order to design strategies and execute research in a manner free of bureaucratic obstacles,” said Annette Bakker, PhD, President and Chief Scientific Officer of the Children’s Tumor Foundation. “The unique value of this consortium of researchers is its collaborative and multidisciplinary activity, bringing researchers together in a way so as to understand NF2 in all its characteristics and manifestations.”

NF2, or neurofibromatosis type 2, is a genetic disorder that affects one in every 25,000 people and causes tumors to grow on the brain, spine, and nerves, and can result in deafness, facial paralysis, inability to walk without assistance, choking and blindness. NF2 patients experience significant morbidity and mortality related to the disease. NF2 affects all populations equally, and there is not yet a cure.

What Will Synodos Deliver?
The Children’s Tumor Foundation has identified the medical issues most faced by NF2 patients, requested proposals from the entire research community, and designed strategies that have a higher probability of finding effective treatments for NF. The Synodos initiative will deliver on this approach with:

  • Multiple new and advanced cell and animal models to accelerate drug screening
  • Real-time data sharing platform developed in partnership with Sage Bionetworks
  • Detailed understanding of the research models in use across the NF2 field
  • New target pathways
  • Increased understanding of response and resistance to treatment
  • Effective combination therapies
  • New clinical trials for NF2
  • Annual milestone reporting

A key facet in this initiative is the participation of Sage Bionetworks, a highly-regarded research institute that will:

  • Ensure that data and knowledge are quickly disseminated throughout the consortium membership as it is produced
  • Create an online, publicly accessible record of the research performed by the consortium, allowing others to freely use the generated data for new purposes

“The impact that this will have on patients is tremendous. Gone is the wait-and-see mentality where research is done in silos, hidden away, sometimes forever,” said Dr. Bakker. “We all want the same thing – to end NF – and we’re going to work together until we meet this goal. More broadly, this research has implications not just for NF, but for other diseases and conditions as well, including cancer. Synodos is a ‘win-win’ for all involved, and most importantly, a big win for the patient.”

In addition to the partnership with Sage Bionetworks, Synodos brings together the following Centers of Excellence (listed alphabetically by the name of the researcher involved)

  • Jaishri Blakeley, MD, Associate Professor of Neurology, Oncology and Neurosurgery at Johns Hopkins University and Director of the Johns Hopkins Comprehensive Neurofibromatosis Center
  • Long-Sheng Chang, PhD, Investigator in the Center for Childhood Cancer and Blood Diseases, the Research Institute at Nationwide Children’s Hospital and Professor in the Department of Pediatrics, The Ohio State University College of Medicine.
  • Wade Clapp, MD, Endowed Professor and Chair of Pediatrics at Indiana University School of Medicine.
  • Cristina Fernandez-Valle, PhD, Professor, Burnett School of Biomedical Sciences, University of Central Florida.
  • James Gusella, PhD, Bullard Professor of Neurogenetics, Massachusetts General Hospital and Harvard Medical School
  • Stephen Haggarty, PhD, Associate Professor of Neurology, Massachusetts General Hospital and Harvard Medical School
  • Gary Johnson, PhD, Professor and Chair of Pharmacology at the University of North Carolina
  • Helen Morrison, PhD Molecular biologist and neuroscientist at Fritz-Lipmann-Institute in Jena, Germany
  • Scott Plotkin, MD, PhD, Associate Professor of Neurology, Massachusetts General Hospital and Harvard Medical School
  • Vijaya Ramesh, PhD, Associate Professor of Neurology, Massachusetts General Hospital and Harvard Medical School
  • Anat Stemmer-Rachamimov, MD, Associate Professor in Pathology, Massachusetts General Hospital and Harvard Medical School
  • D. Bradley Welling, MD, PhD, Chief of Otolaryngology, Masschusetts General Hospital, Chairman of Otology and Laryngology, Harvard Medical School

The Co-PIs leading this team of researchers are (affiliations listed above): Jaishri Blakeley, MD; Wade Clapp, MD; James Gusella, PhD; and Scott Plotkin, MD, PhD.

Synodos’ Team of External Advisors are:

  • Stephen Friend, MD, PhD , President, Co-Founder and Director of Sage Bionetworks
  • Bruce R. Korf, MD, PhD , Chair, Department of Genetics and Director, Heflin Center for Genomic Sciences at the University of Alabama at Birmingham, Chair, Medical Advisory Committee, Children’s Tumor Foundation
  • Gordon B. Mills, MD, PhD , Chair of Gynecology and Chair of Systems Biology in the Division of Cancer Medicine, Co-head of the Kleberg Center for Molecular Markers, University of Texas
  • Terry Van Dyke, PhD , Head of the Mouse Cancer Genetics Program, National Cancer Institute
  • Tracy Tulloh Galloway , Synodos Founding Supporter, Board Member, Children’s Tumor Foundation, NF2 Patient Representative

Synodos’ Founding Supporters, who have generously agreed to support initial funding of this project are:

  • Mark and Tracy Galloway
  • Keller Research Fund


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