A nationwide survey of awareness and understanding of NUT carcinoma among clinicians in China

BACKGROUND: NUT carcinoma is a rare and highly aggressive malignancy defined by NUTM1 gene rearrangement and is frequently misdiagnosed because of non-specific clinicopathological features. We assessed clinicians’ awareness and understanding of NUT carcinoma in China. METHODS: We conducted a nationwide cross-sectional online survey (December 29, 2023–March 27, 2024) distributed via Wenjuanxing and professional networks. Eligible respondents were physicians and in-service trainees practicing in China. Responses with unclassifiable key information (e.g. city/department) were excluded. The questionnaire assessed self-reported awareness across five domains (clinical manifestations, diagnostic approaches, treatment, prognosis, and common NUTM1 fusion partners) and awareness of NUT carcinoma–related organizations. Descriptive statistics were reported as n (%). Multivariable ridge logistic regression with five-fold cross-validation was used to explore associated factors, with Bonferroni correction for multiple comparisons. RESULTS: Among 2222 returned questionnaires, 7 were excluded, leaving 2215 for analysis; 81.2% of respondents were from tertiary hospitals. Overall awareness was low: 1445 (65.2%) reported no awareness of any domain, and awareness rates were 631 (28.5%) for clinical manifestations, 552 (24.9%) for diagnostic approaches, 417 (18.8%) for treatment, 478 (21.6%) for prognosis, and 214 (9.7%) for NUTM1 fusion partners. Only a small minority reported awareness across all assessed domains (approximately 7%). Awareness of related organizations was also limited: 1523 (68.8%) reported knowing none; 664 (30.0%) knew the “NUT Carcinoma Genetic Diagnosis Working Group” of the Chinese Anti-Cancer Association, 224 (10.1%) knew the NUT Carcinoma Registry, and 214 (9.7%) knew the European Cooperative Study Group for Pediatric Rare Tumors. In multivariable models, oncology and pathology were associated with higher awareness, particularly for diagnostic approaches (oncology OR 2.04, 95% CI 1.67–2.51; pathology OR 9.38, 95% CI 6.40–13.21) and prognosis (oncology OR 2.22, 95% CI 1.82–2.76; pathology OR 4.71, 95% CI 2.95–7.22), and with lower odds of reporting “no awareness” (oncology OR 0.52, 95% CI 0.43–0.63; pathology OR 0.15, 95% CI 0.10–0.21) (all Bonferroni-corrected p < 0.001). CONCLUSION: Most surveyed clinicians reported limited awareness of NUT carcinoma, including in tertiary hospitals. Practical strategies should prioritize training for pathology services and tumor-related specialties and strengthen referral pathways and access to NUT immunohistochemistry and molecular diagnostics to reduce missed or delayed diagnoses.