Clinical Trials - Desmoid Tumor Research Foundation

Clinical Trials


DTRF has been advised that as of January 4th, the Nexavar/ Sorafenib Phase III clinical trial has met its accrual goal and stopped recruiting new patients. Current participants will continue with their treatment protocol.


Fluorine (F)-18 16 alpha-fluoroestradiol (18F-FES) positron emission tomography (PET)/computed tomography (CT)

Vanderbilt is currently enrolling patients for an institutionally approved imaging based, non-therapeutic, pilot study investigating the use of 18F- FES- PET in adults with extra-abdominal desmoid tumors.

Desmoid tumors have receptors for estrogen and there are non-receptor mediated effects of estrogen that occur in the body. Some tumors regress or become quiescent with medications that target estrogen receptors. Vanderbilt Medical Center and the Vanderbilt Ingram Cancer Center would like to learn more about the number and function of these receptors in hopes of better understanding what makes desmoid tumors evolve and start and stop growing so that more personalized treatment regimens can be designed.

Study summary

Informed consent form/ FAQs

Each participant will be compensated $400.
If you are interested or for more information, please contact Dr. Kate Hartley at or Dr. Karen Ayres at

CPP-lX/sulindac combination versus CPP-1X and sulindac

Currently, there is a global research study recruiting for Familial Adenomatous Polyposis (FAP) patients.
This randomized, double-blind, phase III trial will compare the efficacy, safety and pharmacokinetics of the CPP-lX/sulindac combination versus CPP-1X and sulindac as single agents over a 24 month treatment period in patients with FAP. All participants will receive at least 1 active drug. Participants will take 4 pills once a day for up to 2 years. There are approximately 6 clinic visits with disease assessments and 3 additional visits to pick up study medication during the two years of the study. A study coordinator will contact patients by phone each month. There is no in-person clinic visit. A total of 150 patients will be randomized.
Feel free to call 520-908-7774 with any questions and click here for more information, including participating institutions.
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