*This information was originally published as part of an abstract for the 2025 NORD Breakthrough Summit*
Understanding Desmoid Tumors and the Unmet Patient Need
Desmoid tumors, also known as aggressive fibromatosis, are invasive, soft-tissue, tumors that can cause severe pain, functional impairment, and significant psychosocial burden. Their variability in presentation and unpredictable clinical course, including potential for spontaneous regression, makes management complex across patient settings. Clinicians are navigating a shifting treatment paradigm with the first systemic therapy approved by the FDA and new therapies under investigation.
The Medlive Approach
To support clinicians in adapting to new treatment advances, Medlive partnered with the National Organization for Rare Disorders (NORD) and the Desmoid Tumor Research Foundation (DTRF) to launch a targeted, accredited online continuing medical education (CME) initiative. The program was designed to improve diagnostic accuracy, confidence in applying new evidence, and alignment of treatment strategies with evolving standards of care.
The activity was delivered in late 2023 as a 12-month accredited program for sarcoma specialists, medical oncologists, and members of the interdisciplinary care team. Education included case-based discussions, expert perspectives, and a patient interview highlighting the impact of desmoid tumors on quality-of-life. Microlearning segments further extended reach to more than 3,700 NPI-verified oncology professionals across digital channels.
Key Findings
- Significant knowledge gains: Average post-activity correct responses increased by 29% for diagnostic verification, 30% for surgical decision-making, and 28% for applying evidence-based treatment strategies (p<0.01).
- Gaps in diagnostic confidence: Before the activity, only 22% of clinicians reported confidence in diagnosing desmoid tumors, reinforcing the need for continued education and clinical guidance.
- Practice challenges identified: The top barriers to optimal care included difficulty establishing an accurate diagnosis (40%), length of time to diagnosis (28%), and managing patient expectations for treatment (26%).
Conclusion – Collaborating for Improved Patient Outcomes
The collaboration between Medlive, NORD, and DTRF proved highly effective, as demonstrated by significant knowledge gains. Following the approval of a new systemic therapy, clinicians were motivated to refine their diagnostic and management strategies, further reinforced by a patient narrative that illuminated the emotional and physical toll of desmoid tumors.
Insights gathered from participants revealed ongoing challenges in diagnosis, communication, and treatment planning, providing valuable direction for future education targeting both clinicians and patients. Together, these findings underscore the importance of continuous, evidence-based learning and collaboration in advancing care for individuals living with desmoid tumors.
To learn more about partnering with Medlive to develop impactful CME programs, reach out via our Contact Us page.
This activity was supported by an independent educational grant from SpringWorks Therapeutics, Inc.
