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The Desmoid Tumor Research Foundation

The DTRF Launches the DTRF Patient Registry and Natural History Study

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With the support of NORD and the FDA, the DTRF begins collecting data which informs the Natural History Study of the disease – a huge step forward in desmoid science.

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This revolutionary program allows patients to advance research by consenting online to the collection of live desmoid tumor tissue during surgery.

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Important discoveries are made concerning the challenges of developing a mouse model that mimics the human disease.

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This development opened the way to more desmoid research.

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The purpose of this tool (called GODDESS) is to have the patient’s voice heard and pave the way for new endpoints in clinical trials. Partnering with Mrinal Gounder, MD at Memorial Sloan Kettering and PRO leaders at IQVIA, the tool would be validated in clinical trials gathering important data on patient quality of life and response to treatment.

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This is followed by many presentations at important medical conferences.