Ongoing Projects
DTRF Virtual Tumor Board Led by Dr. Aaron Weiss, the quarterly DTRF Virtual Tumor Board is an international video conference allowing physicians anywhere in the world to discuss their desmoid tumor cases with leading specialists in the field and receive input. During 2023, four boards were convened. DTRF Patient Registry The DTRF Patient Registry and Natural History Study at DTRF.iamrare.org includes a powerful data collection tool that systematically collects, stores, and retrieves patient data for analysis. By answering online survey questions about your experience, you can help us find trends and disease characteristics that can help us better understand desmoids. This de-identified data is invaluable to our community and to those working on improving patient care and advancing desmoid tumor research. Tissue Donation Since surgeries in desmoid tumors have become less frequent, there is an increased need for fresh desmoid tissue samples for research. The DTRF continues to fund and collaborate in desmoid tumor research projects to learn more about the disease and potential treatments. To pilot new technologies in the disease, researchers need a continuing supply of fresh tissue samples. In partnership with Pattern.org, DTRF facilitates the collection of tissue samples via a simple online consent process. Before surgery, patients can consent at pattern.org to a collection of a portion of excess tumor tissue that is then sent to researchers.
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