Twelve years after: The french national network on rare head and neck tumours (REFCOR)

•In a database comprising 8,134 patients, the 5-year overall survival rate for rare head and neck cancers was 71% (95% CI: 0.69–0.73), while the 5-year event-free survival rate was comparatively lower at 46% (95% CI: 0.44–0.48).•Among the ten most common histologies, acinar cell carcinoma demonstrated a more favourable prognosis. Conversely, mucous melanoma exhibited the poorest prognosis, with a median survival of 43 months.•Furthermore, patients diagnosed with salivary gland cancers exhibited superior 5-year overall survival rates and a lower incidence of recurrences compared to those with rare cancers in the nasal fossae/sinus or laryngeal/hypopharyngeal regions. Rare cancers constitute less than 10% of head and neck cancers and lack sufficient evidence for standardized care. The French Rare Head and Neck Cancer Expert Network (REFCOR) as established a national database to collect data on these rare cancers. This study aims to describe patient and tumour characteristics in this database. Prospective data collection was conducted across multiple centers. Survival analyses were performed using Kaplan Meier method and Log Rank test. Odds ratios were used for comparing proportions. A total of 7208 patients were included over a period of 10 years. The most frequent histologies were: Not Otherwise Specified (NOS) adenocarcinoma 13 %, adenoid cystic carcinoma 12 %, squamous cell carcinoma of rare locations 10 %, mucoepidermoid carcinoma 9 %, intestinal-type adenocarcinoma (8 %). Tumours were located in sinonasal area (38 %); salivary glands (32 %); oral cavity / oropharynx / nasopharynx (16 %); larynx / hypopharynx (3 %); ears (1 %); others (3 %). Tumours were predominantly classified as T4 (23 %), N0 (54 %), and M0 (62 %). Primary treatment approach involved tumour resection (78 %) and / or radiotherapy (63 %). Patients with salivary gland cancers exhibited better 5-year overall survival (OS) rates (p