Resources for the Treatment and Research of Desmoid Tumors
The DTRF aims to support clinicians, researchers, and patients alike. The following resources help advance clinician education and research, and enhance patient care.
The first-of-its-kind Global Consensus Paper on desmoid tumor treatment, “The management of desmoid tumors: A joint global consensus-based guideline approach for adult and pediatric patients,” created with the support of the DTRF, is an invaluable tool that answers critical questions regarding approach to treatment, types of treatments, and pain management. We encourage all clinicians to consider its information and recommendations.
“An Overview of Medical Desmoid Tumor Treatments”
As a rare disease with varying behavior, desmoid tumors can be difficult to treat. Review the current desmoid tumor treatment options and monitoring techniques via essential tools, videos, papers, and other resources from experts in the field.
Clinical trials are critical for rare diseases like desmoid tumors. With limited treatment options available for desmoid patients, clinical trials may be an important consideration in their unique treatment plan.
The DTRF Virtual Tumor Board is an international, quarterly video conference allowing clinicians and leading specialists present and discuss their challenging desmoid tumor cases, and receive input. If you are facing challenges in treating a desmoid tumor case and time is of the essence, your case may be eligible for review by the Virtual Tumor Board. Experts in all fields related to desmoid tumors are invited to participate and give their insights. Practitioners with limited experience in desmoid tumors and students are also welcome to observe for educational purposes.
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Connect & Learn
DTRF Annual International Desmoid Tumor Research Workshop (September)
Finding better treatments for desmoid tumors is a global effort. As part of our annual DTRF Together We Will Weekend each September, the Research Workshop brings together a diverse group of scientists, including the brightest minds in desmoid tumor research, human genetics, drug development, and related fields. In addition to hearing about the latest research and treatments, attendees help set research priorities and facilitate collaborations to move desmoid science forward.
DTRF Annual Patient Meeting (September)
The Patient Meeting is a signature event of our DTRF Together We Will Weekend each September. It provides an important, accessible overview on the latest desmoid tumor treatments and research for the community at large. We strongly encourage clinicians and researchers to attend. The Meeting also provides important insights on the concerns and challenges of the desmoid tumor patient and caregiver community.
Continuing Medical Education (CME) Credits
The DTRF is pleased to offer CME-accredited courses on various subjects relating to desmoid tumors. Learn from leading experts in the field!
The Coordination Core serves as our research administrative center. Its goal is to coordinate research and ensure that data and materials generated through the funded grants are made available to existing and future investigators. The Core also strives to expand the diversity of the research community to investigators in related medical and technological disciplines. Explore our ongoing research projects and learn how you can access data and other findings.
Since surgeries in desmoid tumors have become less frequent, there is an increased need for fresh desmoid tissue samples for research. To donate, all a patient needs to do is fill in an online consent form prior to surgery at Pattern.org.
Desmoid tumor immortalized cell lines are available for purchase at the American Type Culture Collection (ATCC). These tumor-derived models can be used in basic research as well as pharmacological screening applications. The availability of these cell lines is a significant milestone as we work to provide verified and standardized resources to our research community. Discounted pricing is available to academic researchers.
Each year, we fund research that will advance current scientific knowledge about desmoid tumors, moving toward the development of new treatment options and bringing us closer to our ultimate goal of a cure. We are particularly interested in innovative and translational research projects and will consider applications across the spectrum of research from basic science to clinical trials and correlative studies.
From multi-year projects to case studies, you can easily explore decades of published research on desmoid tumors on our searchable Published Research page. We update this resource bi-monthly.
In 2015, DTRF funded the development of the first validated PRO tool in desmoid tumors in partnership with Quintiles (IQVIA) and Memorial Sloan Kettering. They hypothesized that the development of a PRO tool in desmoid tumors would facilitate a new regulatory endpoint that could be used in future clinical trials and that it would be a great investment of resources to advance the field for researchers worldwide.
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News & Updates
November 11, 2023
FDA APPROVES OGSIVEO™ (NIROGACESTAT), AS THE FIRST MEDICAL THERAPY FOR THE TREATMENT OF ADULTS WITH PROGRESSING DESMOID TUMORS.
November 11, 2023
DTRF Hosts the 2023 “Together We Will” Weekend in Philadelphia
September 9, 2023