The DTRF Patient Registry is a dynamic participant-driven resource to empower and unite the desmoid tumor community through shared knowledge. This online platform collects de-identified information from individuals via online surveys. The data can be used by researchers to study the natural history of the disease and ultimately help in the development of new treatment options.
When surgeries are appropriate, fresh desmoid tissue samples can be collected for research. Your fresh desmoid tumor tissue sample could hold the key to unlocking new discoveries about what drives desmoid tumors. With your prior online consent through Pattern.org, a small amount of excess tissue from your surgery will be collected and sent to a key research partner such as the Boehm Lab at the Koch Institute of MIT.
Participation in Clinical Trials
When appropriate for a patient, clinical trials allow them to participate early in the drug development cycle and further researchers’ understanding of the efficacy and tolerance of new therapies.
The DTRF Newsletter
Join the DTRF community! We carefully curate our bi-weekly newsletter to highlight upcoming events, the latest desmoid tumor progress, research updates, and patient care advances!