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Empowering Desmoid Tumor Patients: Education and Resources


Gain insights into valuable educational resources for patients coping with desmoid tumors, such as global consensus papers and advocacy group websites, and the significance of seeking multiple expert opinions for informed decision-making.

This is a video synopsis/summary of a Peer Exchange involving Ryan Haumschild, PharmD, MS, MBA; Tony Phillip, MD; Mrinal Gounder, MD; Ravin Ratan, MD, MEd; and Derek Van Amerongen, MD, MS.

Haumschild leads a discussion with Gounder, Ratan, Phillip, and Van Amerongen on the educational resources available for patients coping with desmoid tumors. Gounder underscores the importance of patient advocacy groups such as the Desmoid Tumor Research Foundation (DTRF) and consensus guidelines for reliable, evidence-based information. He highlights the curated content on the DTRF website by key opinion leaders. Ratan reinforces the credibility of the Global Consensus Paper and DTRF resources, emphasizing their efforts to limit bias. Both physicians stress the value of seeking second opinions for informed decision-making, even among experts.

Haumschild concludes the discussion by acknowledging the significance of multidisciplinary care, ongoing education, and seeking opinions at centers of excellence. The physicians emphasize the dynamic nature of desmoid tumor management, with evolving treatments and the need for holistic care. They encourage patients to use trusted information sources and collaborate with health care providers for personalized treatment plans.

Video synopsis is AI generated and reviewed by AJMC® editorial staff.

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