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ABSTRACT Purpose: To describe the epidemiological and clinical profile of hospitalized patients with retinoblastoma in Brazil. Methods: Using data from the Hospital Cancer Registry of the Instituto Nacional de Câncer, patients with the morphological codes of retinoblastoma who were diagnosed between 2000 to 2018, aged 0–19 years, and followed up in registered hospitals (analytical cases) were selected. The relative and absolute frequencies of demographic, clinical, diagnostic, therapeutic, and outcome variables were described. Hospital performance indicators were calculated and compared between hospitals qualified and not qualified to treat pediatric oncology cases and between hospitals with different case volumes (<20, 20-75, >75 cases). Results: Of the 2,269 identified analytical cases from 86 institutions, 48% were from the Southeast, 54% were male, and 66% were aged <4 years. The proportion of missing data (NA) was too high for several variables. Approximately 84% of the patients were from the public health system, 40% had a positive family history, and 88% had unilateral involvement. The first treatment included surgery in 58.3% of the patients (NA=2), Approximately 36.6% of these patients achieved complete remission, 10.8% achieved partial remission, and 12.7% died (NA=59%). Hospital performance indicators were within the target in >90% of the patients. The median time between the first appointment and diagnosis (6 days, interquartile range [IQR] 1–14) was significantly lower and the median time to death was longer (343 days, IQR, 212-539) in high-volume hospitals (>75 cases) than in medium- and low-volume hospitals. Conclusions: Despite the high proportion of missing data, we found that the delay in diagnosis is due to prehospital factors. Additionally, there is a need for educational programs for healthcare professionals and families that emphasize early identification and referral to specialized centers. Future studies should focus on the impact of Hospital Cancer Registry data completeness on outcomes, causes of delay in diagnosis, regional inequalities, and barriers to accessing specialized services. Purpose Brazil Methods Câncer 200 2018 019 0 19 0–1 years selected demographic diagnostic therapeutic described <20, 20 (<20 2075, 2075 75, 75 20-75 >7 cases. . Results 2269 2 269 2,26 8 institutions 48 Southeast 54 male 66 4 < NA (NA 84 system 40 history 88 involvement 583 58 3 58.3 NA=2, NA2 NA=2 , (NA=2) 366 36 6 36.6 remission 108 10 10.8 127 12 7 12.7 NA=59%. NA59 NA=59% 59 (NA=59%) 90 >90 ( days IQR [IQR 1–14 114 1 14 343 (34 212539 212 539 212-539 highvolume volume (>7 medium lowvolume low Conclusions factors Additionally centers outcomes inequalities services 201 01 0– <20 (<2 207 20-7 > 226 26 2,2 5 58. NA= (NA=2 36. 10. 12. NA5 NA=59 (NA=59% 9 >9 1–1 11 34 (3 21253 21 53 212-53 (> <2 (< 20- 22 2, (NA= NA=5 (NA=59 1– 2125 212-5 (NA=5 212-
