The DTRF Coordinating Center - Desmoid Tumor Research Foundation

The DTRF Coordinating Center

 In November 2020, the DTRF Coordinating Center (“DTRFCC”) was established. This Center will serve as an administrative core to integrate and coordinate research and data across the DTRF investigators and others, expand the diversity of our research community, and facilitate the exchange of scientific information between the investigators from within the field, as well as from related areas. The Center will be led by its chair, Dr. Kelly Mercier, and will report to the Scientific Advisory Board of the DTRF.  





To support the broad scope and rich diversity of our desmoid researchers. The Center will provide coordination, assist in sharing and coordinating research data– especially large data sets such as sequencing, protein analysis, and functional data– and, build new support for desmoid tumor research. This coordinating function will maximize our productivity, scientific impact, and dissemination of desmoid research work. Our core goal is to: facilitate and speed multidisciplinary desmoid research from an interdisciplinary team of investigators, and to grow the cohort of desmoid researchers.


We will accomplish this by:

Integrating and coordinating research and clinical and research data across the DTRF investigators and others in the desmoid research field. The proposed structure will ensure that cross collaborations are strengthened and that desmoid tumor researchers have access to data generated by individual investigators or groups. It will provide a unified leadership voice for our large cohort of desmoid researchers from a variety of disciplines. It will facilitate the coordination of data from different research groups. For instance, the center will help compare genetic, proteomics, functional, and clinical data from different investigators to identify common themes and pathways that can be targeted to develop improved approaches to desmoid tumor management. This will include initiatives such as creating and maintaining a desmoid tumor data repository and in some cases analysis of data; complying with research protocols highlighting best practices and indexing of available resources for sharing; and, organizing the DTRF Virtual Tumor Board to include clinician engagement, expert scheduling, drafting of recommendations, and archiving recordings/learnings.


Expanding the scientific diversity of our research community.  Additional researchers from disciplines currently not represented in our Desmoid Tumor Research Foundation community will be encouraged to participate in desmoid research. By attracting new investigators and established investigators from other fields, we will build on the strengths of our current cohort of members to enhance the generation of new knowledge in desmoid tumor research. Our Research Workshop and a multipronged communication strategy will help attract these researchers. The Center will provide a mechanism to identify new researchers, and then conduct outreach and enrichment activities to spur innovation, accelerate research progress and build the research community. This will include interactions such as Pharmaceutical relations, other patient advocacy groups, and others.


Enhancing our research environment by promoting new collaborations and interdisciplinary research. The Center will leverage existing funds to support new innovative research, new cross institutional projects, and support the development of preliminary data needed to bring new investigators into the field. The DTRFCC and our Research Workshop will help build collaborations, and bring novel research concepts and methodologies to our community of researchers. The DTRFCC will coordinate and promote communication across researchers to facilitate new research activities. This will include interactions, such as government researchers and approval agencies, cooperative research groups, and others.


Assisting in the Coordination of the annual September DTRF International Desmoid Tumor Research Workshop. This will include reaching out to new investigators, inviting participants, and performing any other coordinating activities as assigned by the DTRF leadership and board. 



Given the Foundation’s growing size and its diverse scope of work, a more organized structure to coordinate data from multiple researcher groups is needed. The DTRFCC will enhance the level of coordination of data, allowing our researchers to flourish scientifically in ways that are unlikely to develop spontaneously. Connecting our rich cohort of data and research will encourage the development of novel research directions and collaborations, and will result in accelerated research that will ultimately improve desmoid health outcomes. Evaluation and planning will occur through engagement of the DTRF Scientific Advisory Board. The Center will also provide a unified structure to communicate desmoid research activities, goals, and requirements to the larger scientific and lay communities.