DelveInsight’s “Desmoid Tumors Market Insight, Epidemiology, and Market Forecast – 2034” report delivers an in-depth understanding of desmoid tumor, historical and forecasted epidemiology as well as the desmoid tumors market trends in the United States, EU4 (Germany, France, Italy, and Spain) and the United Kingdom, and Japan.

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Key Takeaways from the Desmoid Tumors Market Report

• In April 2025, M.D. Anderson Cancer Center conducted a study of the safety and effects of an investigational drug called nirogacestat when given to participants with a desmoid tumor/aggressive fibromatosis.
• In April 2025, Children’s Oncology Group announced a phase II trial studies the side effects and how well nirogacestat works in treating patients less than 18 years of age with desmoid tumors that has grown after at least one form of treatment by mouth or in the vein that cannot be removed by surgery. Nirogacestat may stop the growth of tumor cells by blocking some of the enzymes needed for cell growth.
• Desmoid tumors account for <3% of soft tissue tumors. Their annual incidence is estimated to range between 1/250,000–1/500,000.
• In the US, an estimated 1,000–1,650 new patients are diagnosed with desmoid tumors yearly.
• In EU4 and the UK, the 10-year prevalent cases of desmoid tumors were ~4,500 cases in males and ~8,300 cases in females in 2023.
• Extra-abdominal cases were almost three time more than intra-abdominal cases for the year 2023, in Japan.
• More than 90% of cases of desmoid tumors are sporadic and associated with a mutation in the ß-catenin gene (CTNNB1). A minority of desmoid tumors are diagnosed in patients with germline APC mutation, which manifests as FAP.
• Patients with desmoid tumors face many challenges, including delayed diagnosis or misdiagnosis due to lack of awareness by patients and providers; unpredictable disease course.
• The leading Desmoid Tumors Companies such as SpringWorks Therapeutics, Immunome/Ayala Pharmaceuticals, Iterion Therapeutics, Eisai and PRISM BioLab, MedPacto, Inc., Pfizer, Novartis, SpringWorks Therapeutics, Ayala Pharmaceuticals, Iterion Therapeutics, Aadi Bioscience, Inc., INSYS Therapeutics Inc, Recursion Pharmaceuticals Inc., and others
• Promising Desmoid Tumors Therapies such as OGSIVEO (nirogacestat), AL102, Tegavivint (BC2059), E7386, Vactosertib, Sirolimus, Imatinib, Nirogacestat, AL102, Tegavivint, Nab-Rapamycin, Fentanyl sublingual spray, REC-4881, and others.

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Desmoid Tumors Epidemiology Segmentation in the 7MM

• Total Desmoid Tumor Incident Cases
• Desmoid Tumor Type-specific (Sporadic, Familial) Incident Cases
• Desmoid Tumor Gender-specific Incident Cases
• Desmoid Tumor Age-specific Incident Cases
• Desmoid Tumor Site-specific Incident Cases
• Desmoid Tumor Treatable Cases

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Marketed Desmoid Tumors Drugs

• OGSIVEO (nirogacestat): SpringWorks Therapeutics

OGSIVEO (nirogacestat) is an oral, selective, small molecule gamma secretase inhibitor developed by SpringWorks Therapeutics for the treatment of adult patients with progressing desmoid tumors who require systemic treatment. SpringWorks is also evaluating nirogacestat as a potential treatment for patients with ovarian granulosa cell tumors and for patients with multiple myeloma as part of several B-cell maturation agent (BCMA) combination therapy regimens in collaboration with leaders in industry and academia.

Emerging Desmoid Tumors Drugs

• AL102: Immunome/Ayala Pharmaceuticals

AL102 is an investigational small molecule gamma secretase inhibitor (GSI) designed to potently and selectively inhibit Notch 1, 2, 3, and 4. It is currently being evaluated in the Phase II/III RINGSIDE clinical studies in patients with progressing desmoid tumors. AL102 is designed to inhibit the expression of Notch gene targets by blocking the final cleavage step by the gamma-secretase required for Notch activation.

• Tegavivint (BC2059): Iterion Therapeutics

Tegavivint is a potent and selective first-in-class small molecule inhibitor of Transducin Beta-like Protein One (TBL1), a novel downstream co-factor in the Wnt/beta-catenin signaling pathway. Increased expression of beta-catenin and TBL1 are associated with metastasis and poor prognosis in a broad range of tumor types. Tegavivint’s targeting of TBL1 prevents TBL1/beta-catenin complex formation, specifically inhibiting beta-catenin’s oncogenic transcriptional activity without disrupting key cell membrane functions that have been linked to toxicity common to other drugs in this pathway. The company completed Phase I clinical trial for Tegavivint in 2022.

• E7386: Eisai and PRISM BioLab

E7386 is a CBP/ß-catenin inhibitor that inhibits protein-protein interactions between the transcription coactivator CREB-binding protein (CBP) and ß-catenin, and regulates the Wnt signaling-dependent gene expression. Since E7386 acts on the CBP/ß-catenin transcription complex located at the most downstream of the Wnt signaling, it is expected to inhibit not only ligand-dependent activation but also activation caused by gene mutations in Wnt signaling factors such as adenomatous polyposis coli (APC) and ß-catenin.

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Desmoid Tumors Market Outlook

Desmoid tumor is a localized neoplasm with no metastatic potential but an unpredictable course. Asymptomatic patients can be monitored with a “watch and wait” approach, while symptomatic patients, especially those with Gardner’s syndrome, may require systemic therapy. Surgery and hormonal therapy with or without NSAIDs are not first-line treatments. TKIs like sorafenib and GSIs like nirogacestat have shown significant benefits in Phase III trials, and new treatments targeting the Wnt pathway are in development. Cryoablation is promising for extra-abdominal desmoid tumors.

Desmoid Tumors Drugs Market Insights

Surgery is recommended for active management, especially for abdominal wall desmoid tumors, with the goal of R0 resection. If R1 resection is unavoidable, it can be considered for functional or cosmetic reasons. For R1 resections, perioperative radiotherapy or reoperation is not recommended. If surgery isn’t possible, moderate-dose radiotherapy can control the disease. Active surveillance with regular imaging is the standard approach unless progression or symptoms warrant treatment.

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Scope of the Desmoid Tumors Market Report

• Coverage- 7MM
• Study Period- 2020-2034
• Desmoid Tumors Companies- SpringWorks Therapeutics, Immunome/Ayala Pharmaceuticals, Iterion Therapeutics, Eisai and PRISM BioLab, MedPacto, Inc., Pfizer, Novartis, SpringWorks Therapeutics, Ayala Pharmaceuticals, Iterion Therapeutics, Aadi Bioscience, Inc., INSYS Therapeutics Inc., Recursion Pharmaceuticals Inc., and others
• Desmoid Tumors Therapies- OGSIVEO (nirogacestat), AL102, Tegavivint (BC2059), E7386, Vactosertib, Sirolimus, Imatinib, Nirogacestat, AL102, Tegavivint, Nab-Rapamycin, Fentanyl sublingual spray, REC-4881, and others.
• Desmoid Tumors Market Dynamics: Desmoid Tumors Market Drivers and Barriers
• Desmoid Tumors Market Access and Reimbursement, Unmet Needs and Future Perspectives

Table of Contents

1. Key Insights

2. Desmoid Tumors Market Report Introduction

3. Desmoid Tumors Executive Summary

4. Key Events

5. Desmoid Tumors Epidemiology and Market Forecast Methodology

6. Desmoid Tumors Market Overview at a Glance

7. Desmoid Tumors Market Disease Background and Overview

8. Guidelines

9. Epidemiology and Patient Population of Desmoid Tumors in the 7MM

10. Desmoid Tumors Patient Journey

11. Desmoid Tumors Marketed Drugs

12. Desmoid Tumors Emerging Drugs

13. Desmoid Tumors: 7MM Analysis

14. Desmoid Tumors Unmet Needs

15. Desmoid Tumors SWOT Analysis

16. Desmoid Tumors KOL Views

17. Desmoid Tumors Market Access and Reimbursement

18. Appendix

19. DelveInsight Capabilities

20. Disclaimer

21. About DelveInsight

About Us

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