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Condition (MeSH)

Desmoid Tumors

ClinicalTrials.gov lists 67 trials for Desmoid Tumors or a narrower condition beneath it. Children's Oncology Group has the most among industry and government lead sponsors, with 7.

MeSH D018222 Neoplasms Neoplasm C04 Listed by Orphanet as a rare disease
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Phase 1 Phase 1 9 Phase 1/2 Phase 1/2 6 Phase 2 Phase 2 16 Phase 2/3 Phase 2/3 1 Phase 3 Phase 3 4 Phase 4 Phase 4 1 Not applicable Not applicable 9 Observational Observational 19 Phase 1 Phase 1 9 Phase 1/2 Phase 1/2 6 Phase 2 Phase 2 16 Phase 2/3 Phase 2/3 1 Phase 3 Phase 3 4 Phase 4 Phase 4 1 Not applicable Not applicable 9 Observational Observational 19

Trials per phase

1 more section with rows

67 of the 67 trials are tagged with Desmoid Tumors itself; the rest are tagged with a narrower condition beneath it.

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The PDF carries up to 50 rows of each section, where the page shows the first few, with the sources listed. Enter a work email and confirm it from the message we send, and the report follows by email.

When did Desmoid Tumors trials start? (24)

Shown in this order: most recent first, 1990 onwards. 2026 is partial: trials registered with a 2026 start date so far, not a full year. 1 trial is registered to start in 2027 or later, and not listed here.

Trials over time, by phase

  • Phase 1
  • Phase 1/2
  • Phase 2
  • Phase 2/3
  • Phase 3
  • Phase 4
  • Not applicable
  • Observational

Top of scale: 7

1991: 1 trials (Phase 2 1) 1997: 1 trials (Phase 2 1) 1999: 1 trials (Observational 1) 2001: 2 trials (Phase 2 1, Phase 1 1) 2004: 2 trials (Phase 2 1, Phase 1/2 1) 2007: 2 trials (Phase 3 1, Phase 2 1) 2009: 2 trials (Phase 2 1, Phase 1 1) 2010: 1 trials (Phase 2 1) 2011: 1 trials (Phase 1 1) 2012: 1 trials (Phase 2 1) 2013: 3 trials (Observational 2, Phase 2 1) 2014: 3 trials (Phase 3 1, Phase 1/2 1, Phase 1 1) 2015: 5 trials (Observational 2, Not applicable 2, Phase 1 1) 2016: 3 trials (Observational 1, Not applicable 1, Phase 1 1) 2017: 3 trials (Phase 2 2, Phase 1/2 1) 2018: 2 trials (Phase 2 1, Phase 1 1) 2019: 3 trials (Phase 3 1, Phase 1/2 1, Phase 1 1) 2020: 5 trials (Observational 3, Phase 3 1, Phase 2 1) 2021: 4 trials (Not applicable 2, Phase 2/3 1, Phase 1/2 1) 2022: 2 trials (Observational 1, Not applicable 1) 2023: 3 trials (Observational 1, Phase 2 1, Phase 1/2 1) 2024: 7 trials (Observational 4, Not applicable 3) 2025: 4 trials (Observational 2, Phase 4 1, Phase 2 1)

Trials registered with a start date in each year, 1990 onward, stacked by phase (complete years only; the current partial year is in the table's notes). The table below lists the same counts, most recent years first.

Trials started per year
Year Trials started
2026 (partial year) 2
2025 4
2024 7
2023 3
2022 2
2021 4
2020 5
2019 3
2018 2
2017 3

No forecast is made for this condition: it averages 3.8 trial starts a year over the five years to September, under the 5 a year the method needs.

Prediction, not a registry value: median of 36 months from start to primary completion across 7 trials still running at the 2026-10-09 snapshot; registered median of 51 months across 35 trials with a primary completion typed Actual. Source: ClinicalTrials.gov / AACT (CTTI), public domain.

What phase are Desmoid Tumors trials in? (9)

Shown in this order: phase order.

Show the trials by phase as a table
Trials by phase
Phase Trials
Phase 1 9
Phase 1/2 6
Phase 2 16
Phase 2/3 1
Phase 3 4
Phase 4 1
Not applicable 9
Observational 19
Expanded access 2

How many Desmoid Tumors trials are recruiting? (10)

Shown in this order: the order a trial moves through, from not yet recruiting to unknown.

Trials by recruitment status
Status Trials
Not yet recruiting 2
Recruiting 14
Enrolling by invitation 1
Active, not recruiting 7
Available 1

Status as registered on ClinicalTrials.gov. Each trial is counted once.

Which lead sponsors run the most Desmoid Tumors trials? (4)

Shown in this order: most trials first. Lead sponsors the registry classes as industry, NIH, US federal, other government or network. A hospital or university the registry files as government can appear here. Sponsors it classes as academic or other are shown on the full page, because that class cannot separate an institution from a named investigator.

Lead sponsors
Sponsor Trials
Children's Oncology Group 7
National Cancer Institute (NCI) 4
SpringWorks Therapeutics, Inc., a healthcare company of Merck KGaA, Darmstadt, Germany 4
Eisai Co., Ltd. 1

Which drugs are being tested for Desmoid Tumors? (5)

Shown in this order: most trials first. One row per drug, matched to a single molecule under all its names, ranked by number of trials.

Drugs tested
Drug Trials
Nirogacestat 8
NIVOLUMAB 3
Tegavivint 2
Toremifene 2
Imatinib 2

Interventions as named in the registry (10)

Shown in this order: most trials first.

Interventions as named in the registry
Drug Trials
Cryoablation 3
Doxorubicine 2
Blood Sampling 2
Vinblastin 1
vactosertib/imatinib combination 1

These are the names sponsors entered on ClinicalTrials.gov that we have not matched to a single molecule. Some are drugs under a brand or code name; others are procedures, doses or arm labels.

Which serious adverse events do Desmoid Tumors trials report? (10)

Shown in this order: most subjects affected first. Subjects affected summed across trials, a cross-trial signal, not a rate.

Serious adverse events in this condition's trials
Adverse event Subjects affected Trials
Abdominal pain 5 4
Nausea 4 2
Sepsis 4 2
Hypertension 3 1
Premature menopause 3 1

Which publications cover Desmoid Tumors? (42)

Shown in this order: major-topic papers first, then newest, then most linked to trials.

Publications
Publication Journal Year Major topic
Efficacy and Safety of Long-Term Continuous Nirogacestat Treatment in Adults With Desmoid Tumors: Results From the DeFi Trial. Journal of clinical oncology : official journal of the American Society of Clinical Oncology 2025 Yes
Phase II basket trial of dual anti-CTLA-4 and anti-PD-1 blockade in rare tumors (DART) SWOG S1609: the desmoid tumors. Journal for immunotherapy of cancer 2024 Yes
Nirogacestat, a γ-Secretase Inhibitor for Desmoid Tumors. The New England journal of medicine 2023 Yes
GOunder/Desmoid Tumor Research Foundation DEsmoid Symptom/Impact Scale (GODDESS<sup>©</sup>): psychometric properties and clinically meaningful thresholds as assessed in the Phase 3 DeFi randomized controlled clinical trial. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation 2023 Yes
A Prospective Observational Study of Active Surveillance in Primary Desmoid Fibromatosis. Clinical cancer research : an official journal of the American Association for Cancer Research 2022 Yes

Prevalence (3)

Shown in this order: jurisdiction, then disease name. Orphanet observation for the mapped ORPHA concept; the mapping relation column says whether that concept is exactly this condition or broader or narrower.

Prevalence
Orphanet disease Type Class Geography Jurisdiction Mapping relation
Desmoid tumor Annual incidence 1-9 / 1 000 000 Finland Not stated Unspecified
Desmoid tumor Annual incidence 1-9 / 1 000 000 Europe Not stated Unspecified
Desmoid tumor Point prevalence Unknown Worldwide Not stated Unspecified

Not on this page

Not measured: delivery record.

Checked, with nothing recorded for this condition: rare-disease identity and sub-conditions in mesh.

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