2023 Impact Report
Cure Desmoid Tumors Our Mission:
The Desmoid Tumor Research Foundation (DTRF) empowers and unites everyone committed to finding answers for the desmoid tumor community. Every year we gain extraordinary momentum in our progress. Our research and collaboration efforts have led to the 2023 FDA approval of the first-ever medical therapy to treat desmoid tumors, as well as other emerging therapies, new clinical trials, and important discoveries about the disease. The DTRF is the only foundation in the country solely dedicated to funding desmoid tumor research and finding treatments for this rare disease.
The personal stories and experiences from desmoid tumor patients around the world inform the DTRF’s annual strategic plan and collaboration efforts.
STRATEGIC AREAS
Research
Patient Support
Education & Collaboration
Research Hosts Annual DTRF Together We Will Weekend, for patient networking, support and learning Offers 1-on-1 support to patients seeking guidance Provides digital outreach & education Hosts dynamic website, featuring the latest news and research about desmoid tumors Runs virtual events hosted by staff with patients, clinicians, and researchers Hosts quarterly International Virtual Tumor Board in collaboration with leading desmoid tumor specialists Programming informed by Patient Advocacy Committee
Research Funds research projects at the world’s top sarcoma cancer research centers in both basic science and clinical trials; led by the DTRF Scientific & Medical Advisory boards Seeks to determine what goes wrong in cells to generate desmoid tumors, what systemic and local treatment options work best, and what drugs or treatment modalities could provide greater relief for patients Facilitates collaboration among researchers from multiple institutions Presents collaborative research findings at professional conferences
Convenes researchers, clinicians and industry at Annual DTRF Together We Will Weekend; hosts DTRF International Research Workshop Online hub features published research, including conference abstracts and posters Manages multiple research initiatives through DTRF Research Coordination Core Partners to produce accredited CME Programs Collaborates with patients to power research via: Tissue donation through Pattern.org DTRF Desmoid Tumor Patient Registry
2023 Impact Report
Discoveries made through desmoid tumor research can potentially have an impact on common cancers such as breast, colon, ovarian, and others. Highlights:
NEW FDA-Approved Drug OGSIVEO (nirogacestat) First drug with desmoid tumor indication
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NEW Desmoid Tumor Cell Line
Direct Requests for Support from Patients & Caregivers 136
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Mental Health Webinars Created to support patients
2023 DTRF-Funded Research Grants
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Actively Recruiting Clinical Trials
Medical Institutions and Industry Partners Represented at DTRF Research Workshop
Desmoid Tumor Natural History Study Poster won category award at 2023 Connective Tissue Oncology Society Conf.
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30
Recorded Scientific/Educational Presentations Created to support patients
Registrants at the DTRF Annual
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Together We Will Weekend 163
CME-Accredited Programs Launched
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NEW Set of ICD-10 Codes Specific to desmoid tumors
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International Medical Advisory Board Members Guiding DTRF's research priorities
Cases Presented at DTRF Int’l Virtual Tumor Boards
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I have never seen a group of people able to mobilize companies and the FDA like this!! JEAN PATY, PHD VP, PATIENT CENTERED ENDPOINTS, IQVIA
As we uncover answers , we work tirelessly to provide patients and caregivers with the resources, information, and opportunities needed to be informed advocates in their care.
We are undaunted.
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