Retinoblastoma outcomes in Europe: a prospective analysis of 483 patients from 40 countries

Bowman R.; Arazi M.; Cassoux N.; Foster A.; Gomel N.; Kapelushnik N.; MacLeod D.; Fabian I.D.; Zondervan M.; Ziko O.A.O.; Zia N.; Zhilyaeva K.; Zheng X.; Zhao J.; Zhang Y.; Zhang C.; Zein E.; Zapata López A.M.; Yuliawati P.; Yousef Y.A.; Ye H.; Yarovoy A.A.; Yarovaya V.A.; Yaqub M.A.; Yanga J.M.; Yang H.; Yam J.C.; Xiao Y.; Xiang D.; Wongwai P.; Dod C.W.; Wiwatwongwana D.; Wiwatwongwana A.; Wime A.D.C.; Wilson M.W.; Weiss A.; Wang Y.-Z.; Wali Nigeria A.H.; Wade P.D.; Waddell K.; Wackernagel W.; Wachtel A.E.; Vora T.; Vishnevskia-Dai V.; Villacís Chafla E.G.; Viksnins M.; Victor A.A.; Verma N.; Veleva-Krasteva N.V.; Vaughan L.O.; Vasquez L.; Varadisai A.; van Hoefen Wijsard M.; Valeina S.; Usmanov R.H.; Ushakova T.L.; Urbak S.F.; Uner O.E.; Unal E.; Umar A.B.; Tyau-Tyau H.; Tuncer S.; Trichaiyaporn S.; Traoré F.; Trang D.L.; Toledano H.; Theophile T.; Teh K.H.; Teixeira L.F.; Tehuteru E.S.; Tateshi B.; Tashvighi M.; Tarrillo Leiva F.F.; Tandili A.; Tan D.; Tamamyan G.; Sylla F.; Svojgr K.; Suzuki S.; Surukrattanaskul S.; Supriyadi E.; Superstein R.; Sundy M.; Sun X.; Sultana S.; Suarez M.E.C.; Strahlendorf C.; Stones D.K.; Kranjc B.S.; Stathopoulos C.; Stahl E.D.; Staffieri S.E.; Stacey A.W.; Ssali G.; Sorochynska T.; Soebagjo H.D.; Skalet A.H.; Sitorus R.S.; Singha P.; Singh U.; Singh N.; Singh A.D.; Silva S.; Cheikh S.S.; Siddiqui S.N.; Shields C.L.; Shetye N.G.; Sherief S.T.; Sharma M.K.; Shakoor S.A.; Shah A.S.; Seth R.; Seregard S.; Sedaghat A.; Schoeman J.; Schefler A.C.; Scanlan T.A.; Sayalith P.; Sánchez F G.L.; Pacheco S.S.R.; Salas B.; Saiju R.; Said A.M.A.; Sagoo M.S.; Sabhan A.H.; Saakyan S.; Saab R.H.; Roy S.R.; Romero L.; Rojanaporn D.; Ritter-Sovinz P.; Riheia M.M.; Ribadu D.; Reynders D.; Renner L.A.; Reich E.; Reddy M.A.; Rashid R.; Raobela L.; Ramirez-Ortiz M.A.; Ramasubramanian A.; Ramanjulu R.; Rajkarnikar P.; Rahmat J.; Rahman S.; Rahman A.; Qian J.; Qayyum S.; Qadir A.O.; Purwanto I.; Prom V.; Prat D.; Pons J.J.; Pompe M.T.; Polyakov V.G.; Polania R.A.; Pochop P.; Plager D.A.; Philbert R.; Pham C.T.M.; Perić S.; Peña A.; Pe’er J.; Pawinska-Wasikowska K.; Paton K.E.; Pascual Morales C.R.; Parulekar M.; Parrozzani R.; Papyan R.; Palanivelu M.S.; Pal B.P.; Paiva L.; Paintsil V.; Painter S.L.; Pagarra H.; Paez-Escamilla M.A.; Ossandon D.; Osei-Bonsu P.; Oliver S.C.N.; Olechowski A.; Oguego N.C.; Obono-Obiang G.; Nyaywa M.; Nuruddin M.; Nkumbe H.; Nkanga E.D.; Nikitovic M.; Nieves R.M.; Ngo H.; Neroev V.; Nency Y.M.; Roth P.A.N.; Naumenko L.; Nair A.G.; Naidu G.; Muyen O.M.; Mustak H.; Mushtaq A.; Musa K.O.; Murray T.G.; Murgoi G.; Munier F.L.; Muma K.I.; Mudaliar S.S.; Msukwa G.; Msina M.S.; Mruthyunjaya P.; Moreira C.; Morales R.A.; Montero M.M.; Moll A.C.; Mohammad M.T.; Mohamedani A.A.; Mndeme F.G.; Mishra D.K.C.; Midena E.; Mets M.B.; Mercado G.J.V.D.S.; Menon V.; Mengesha A.A.; Mehrvar A.; Medina-Sanson A.; McKenzie J.D.; Paed M.; Mbumba F.B.; Mayet I.; Matua M.; Mattosinho C.C.D.S.; Materin M.; Matende I.O.; Mason J.O., III; Mason L.; Begue N.M.; Manda C.; Makimbetov E.K.; Makan M.; Maka E.; Majeed A.R.; Mahajan A.; Magrath G.N.; Lysytsia L.; Lutfi D.; Luna-Fineman S.; Lumbroso L.; Lukamba R.M.; López J.P.; Long Q.B.; Limbu B.; Li C.; Leverant A.A.; Lecuona K.; Le B.H.A.; Laurenti K.D.; Latinović S.; Larson S.A.; Lam G.C.; Lam C.P.S.; Lachmann E.S.; Kyara A.; Kuntorini M.W.; Kulvichit K.; Kruger M.; Krivaitiene D.; Palet J.E.K.K.; Klett A.; Kivelä T.T.; Kiratli H.; Kim J.H.; Kim J.W.; Khotenashvili Z.; Khodabande A.; Khetan V.; Kheir W.J.; Phara K.; Khaqan H.A.; Khan Z.J.; Keren-Froim N.; Kepak T.; Kebudi R.; Kardava T.; Kao L.-Y.; Kantar M.; Kalinaki A.; Kaliki S.; Kabore R.L.; Amani Kabesha T.B.; Jones M.M.; Johnson W.J.; Johnson K.P.; Jo D.H.; Ji X.; Jenkinson H.; Jeeva I.; Jairaj V.; Ilic V.R.; Ida R.; Hussein Al-Janabi A.N.; Husakova K.; Hummlen M.; Hubbard G.B.; Huang L.C.; Hordofa D.F.; Hessissen L.; Hernandez L.M.C.; Hernandez J.; Hederova S.; Hassan S.; Hassan S.; Hasanreisoglu M.; Hartnett M.E.; Harbour J.W.; Hansen E.D.; Hamzah N.; Hamid S.A.; Hamel P.; Hadjistilianou T.; Gupta S.; Gupta H.; Gündüz A.K.; Gunasekera D.S.; Guedenon K.M.; Grigorovski N.D.A.K.; Gregersen P.A.; Green L.; Graells J.; Garcia Pacheco H.N.; González-Rodríguez L.; Perez G.G.; Gonzalez E.; Gole G.A.; Goldberg-Lavid M.; Gold A.S.; Goenz M.A.; Gizachew Z.; Girón A.V.; Gilbert C.; Ghassemi F.; Geel J.A.; Gassant P.Y.; Aldana D.G.; Garcia J.L.; Gandiwa M.; Gallie B.L.; Fuentes-Alabi S.L.; Fu L.D.; Frenkel S.; Foster A.; Fernández-Teijeiro A.; Fernández D.D.P.G.; Fasina O.; Faranoush M.; Fandiño A.C.; Fadoo Z.; Evina T.G.A.; Essuman V.A.; Elzembely M.M.; Ali Elhassan M.M.; Elhaddad A.M.; Elgalaly D.; Elder J.E.; Elbahi A.M.; Kettani A.E.L.; Sutyawan I.W.E.; Edison K.S.; Bruyn M.D.; Du Y.; Dragomir M.D.; Donato Macedo C.R.; Donaldson C.; Phil M.; Dodgshun A.J.; Dimaras H.; Diaz Coronado R.Y.; Desjardins L.; Demirci H.; Delgado K.Q.; Potter P.D.; Davidson A.; Davanzo J.M.; Das S.; Das A.; Dangboon W.; Da Gama I.V.; Cui X.; Csóka M.; Cowan-Lyn K.E.; Corson T.W.; Correa Llano M.G.; Correa Z.M.; Comsa C.; Cockcroft R.L.; Cieslik K.; Chuluunbat T.; Chiwanga F.S.; Chernodrinska V.S.; Chawla B.; Chauhan A.; Chaugule S.S.; Chaudhry S.; Chantada G.L.; Català-Mora J.; Castillo L.; Castela G.; Michael Capra F.R.C.P.I.; Cano M.R.; Camuglia J.E.; Calle Jara D.A.; Calderón-Sotelo P.; Buaboonnam J.; Brichard B.G.; Brennan R.C.; Boumedane A.; Bouguila H.; Bouda G.C.; Bornfeld N.; Bonanomi M.T.B.C.; Boldt H.C.; Boehme M.; Bobrova N.; Blum S.; Biewald E.M.; Biddulph S.J.; Bhat S.; Bhaduri A.; Berry J.L.; Berete R.C.; Guebessi N.B.; Benmiloud S.; Benavides R.; Popovic M.B.; Bascaran C.; Barranco H.; Balwierz W.; Balayeva R.; Balaguer J.; Baizakova B.; Ayala S.; Aung T.H.; Attaseth T.; Atsiaya R.; Atchaneeyasakul L.-O.; Atalay H.T.; Astbury N.J.; Antonino R.; Amiruddin P.O.; Al-Shammary E.H.; Al-Shaheen A.A.S.M.; Alsawidi K.M.; Almeida A.A.; Al-Mafrachi A.A.R.M.; All-Eriksson C.; Alkatan H.M.; Al-Jumaly U.; Al-Jadiry M.F.; Alia D.B.; Ali A.M.; Al-Hussaini H.H.Y.; Al-Haddad C.; Carreras Y.A.; Alfa Bio A.I.; Alemany-Rubio E.; Alejos A.; Al-Dahmash S.A.; Alcasabas A.P.A.; Al-Badri S.A.F.; Portabella S.A.; Alakbarova A.; Al Ani M.H.; Harby L.A.; Akib M.N.R.; Ahmad A.; Aghaji A.E.; Aggarwal P.; Afshar A.R.; Adio A.; Ademola-Popoola D.S.; Sahadatou A.B.; Abdulqader R.A.; Abdullahi S.U.; Abdallah E.; Fabian I.D. · Eye (Basingstoke) (2026) · DOI: 10.1038/s41433-025-04144-y

Resumen

Purpose: To describe presentation, treatment and outcomes for a cohort of children presenting with retinoblastoma (Rb) throughout Europe during 2017. Methods: A prospective analysis of 483 patients diagnosed in Europe between Jan 1, 2017, and Dec 31, 2017, then treated and followed up for 3 years. Results: Unilateral cases 339/483 (70%) predominated, presenting older (mean age 26 months) than the 144 (30%) bilateral cases (mean age 12 months p < 0.0005). Only 4/477 (0.8%) children had extra-ocular Rb at presentation (mean age 53 months vs 21 months for those without p = 0.002). Children from middle income countries did not present older, but were more likely (p < 0.001) to present with late-stage disease (3-4) than high-income children (74/151 (49%) vs 108/332 (33%), RR 1.25 95%CI 1.09–1.44). For unilaterals, primary treatment was intravenous chemotherapy (IVC) in 29% and intra-arterial chemotherapy (IAC) in 20%. For bilaterals, primary treatment was IVC in 113/144 (78%) and IAC in 14/144 (10%). Overall, 58% of children underwent enucleation, 36% of which as primary treatment. Risk of enucleation was determined by stage and laterality, but not economic status. Twelve (2.5%) children died from Rb. More children (OR = 146-7 13.9–1549.4, p < 0.0005) presenting with extra-ocular tumour died (3 of 4 (75%)) than with intra-ocular tumour (9/449 (2%)) More children (OR = 29.8 3.8–232.0, p < 0.0005), from middle income countries died from Rb (11/132 (8%)) than from high income countries (1/327 (0.3%)). Conclusion: Even within a wealthy continent such as Europe, economic factors may influence survival, but not global salvage rates. The majority of children still lose an eye. © The Author(s), under exclusive licence to The Royal College of Ophthalmologists 2025.