In November 2020, the DTRF Coordinating Center (“DTRFCC”) was established. This Center serves as an administrative core to integrate and coordinate research and data across DTRF investigators and others, to expand the diversity of our research community, and to facilitate the exchange of scientific information between the investigators in the field, as well as from related areas. The Center is led by the DTRF Research Director in consultation with its Chair, Dr. Kelly Mercier, and reports to DTRF’s Scientific Advisory Board.

What will the DTRF Coordinating Center do?

To support the broad scope and rich diversity of our desmoid researchers, the Center assists in sharing and coordinating research data (especially large data sets such as sequencing, protein analysis, and functional data) and works to build new support for and coordination of desmoid tumor research. This coordinating function will maximize our productivity, scientific impact, and dissemination of desmoid research work, and will advance DTRF’s mission to facilitate and speed multidisciplinary desmoid research.

How will we do it?

Integrating and coordinating clinical and research data across investigators. The structure of the DTRFCC will ensure that contributed desmoid tumor research data will be broadly accessible, including contributed data from within DTRF as well as from outside. This will enhance cross collaborations and ensure that desmoid researchers have access to data generated by individual investigators or groups. For instance, comparing genetic, proteomics, functional, and clinical data from different investigators may identify common themes and pathways. These findings could then be used to develop improved approaches to desmoid tumor management. The Center includes maintaining a desmoid tumor data repository (and in some cases analysis of data), making available research protocols highlighting best practices, and indexing of available resources for sharing. The DTRFCC will provide a strong leadership voice for the importance of open science and data sharing to move desmoid research forward.
Expanding the scientific diversity of our research community and facilitating collaborations. Because desmoid tumors are heterogeneous and complex to manage, a multidisciplinary approach is needed to address this disease. The DTRFCC will seek out new investigators and established investigators from other fields to apply cutting-edge findings to the field of desmoid tumors. We seek to enhance the research environment by promoting new collaborations and interdisciplinary research. The DTRF fiercely believes that only with collaborative research can we find a cure for desmoid tumors. The DTRFCC will identify potential areas of collaboration across the desmoid field and actively work to bring individual investigators together to work on challenging problems together. The Center will also spur new collaborations with other non-profit organizations, pharmaceutical companies, and government agencies to ensure that research does not stop in the lab and makes its way to help patients.

Why is it important?

The DTRFCC will enhance the level of coordination of research and data, allowing researchers to flourish scientifically in ways that are unlikely to develop spontaneously.  We expect that the Center will result in the development of novel research directions and collaborations, and will result in accelerated research that will ultimately improve desmoid health outcomes.