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1. The Global Retinoblastoma Outcome Study: a prospective, cluster-based analysis of 4064 patients from 149 countries

Author

Alia, DB, Tandili, A, Paiva, L, Wime, AD, Chantada, GL, Fandino, AC, Sgroi, M, Papyan, R, Tamamyan, G, Camuglia, JE, Gole, GA, Clark, A, Lam, GC, Elder, JE, McKenzie, JD, Staffieri, SE, Jones, MM, Manudhane, R, Sia, D, Ritter-Sovinz, P, Schwab, C, Balayeva, R, Khan, Z, Nuruddin, M, Roy, SR, Rashid, R, Sultana, S, Shakoor, SA, Naumenko, L, Zhilyaeva, K, Bartoszek, P, Brichard, BG, De Potter, P, Bio, AIA, Salas, B, Coleoni Suarez, ME, Mbumba, FB, Bonanomi, MTBC, Donato Macedo, CR, Grigorovski, NDAK, Mattosinho, CCDS, Teixeira, LF, Oscar, AH, Veleva-Krasteva, NV, Bouda, GC, Kabore, RL, Philbert, R, Evina, TGA, Nkumbe, HE, Kamsang, P, Muyen, OM, Dimaras, H, Mallipatna, A, Hamel, P, Superstein, R, Paton, KE, Strahlendorf, C, Palet, JEKK, Tyau-Tyau, H, Cavieres, I, Lopez, JP, Oporto, J, Ossandon, D, Chen, W, Xiang, D, Du, Y, Li, K, Ji, X, Tang, J, Li, C, Xu, B, Qian, J, Xue, K, Sun, X, Wang, Y-Z, Zhang, Y, Wu, S-Q, Xiao, Y, Yang, H, Ye, H, Polania, RA, Berete, RC, Couitchere, L, Peric, S, Alemany-Rubio, E, Gonzalez-Rodriguez, L, Autrata, R, Kepak, T, Pochop, P, Svojgr, K, Gregersen, PA, Urbak, SF, Montero, MM, Budiongo, A, Yanga, JM, Amani, TBK, Lukamba, RM, Numbi, MN, Calle Jara, DA, Villacis Chafla, EG, Sanchez, GL, Abouelnaga, S, Afifi, MA, Elhaddad, AM, Ali, AM, Elzembely, M, Said, AMA, Ziko, OAO, Fuentes-Alabi, SL, Goenz, MA, Eerme, K, Klett, A, Hordofa, DF, Mengesha, AA, Sherief, ST, Kivela, TT, Nummi, K, Cassoux, N, Desjardins, L, Obono-Obiang, G, Kardava, T, Khotenashvili, Z, Bechrakis, NE, Biewald, EM, Schlueter, S, Ketteler, P, Amankwaa-Frempong, D, Essuman, VA, Paintsil, V, Renner, LA, Alejos, A, Giron, A, Carreras, YA, Fu, LD, Maldonado, C, Wong, ES, Yam, JC, Csoka, M, Maka, E, Aggarwal, P, Gupta, V, Bhaduri, A, Bhattacharyya, A, Das, A, Chawla, B, Das, P, Das, S, Gupta, H, Gupta, S, Verma, N, Kaliki, S, Khetan, V, Maitra, P, Mahajan, A, Menon, V, Mishra, DKC, Palanivelu, MS, Ramanjulu, R, Mudaliar, SS, Nair, AG, Natarajan, S, Seth, R, Singh, U, Bhat, S, Dudeja, G, Tripathy, D, Akib, IMNR, Pagarra, H, Amiruddin, PO, Kuntorini, MW, Armytasari, I, Supriyadi, E, Sutyawan, IWE, Yuliawati, P, Lutfi, D, Soebagjo, HD, Rahman, A, Sitorus, RS, Victor, AA, Tehuteru, ES, Widiarti, W, Nency, YM, Faranoush, M, Mehrvar, A, Tashvighi, M, Sedaghat, A, Ghassemi, F, Khodabande, A, Abdulqader, RA, Al-Shaheen, AASM, Al Ani, MH, Haydar, H, Al-Badri, SAF, Al-Jadiry, MF, Sabhan, AH, Al-Jumaily, U, Al-Mafrachi, AARM, Al-Shammary, EH, Al-Janabi, ANH, Qadir, AO, Capra, M, Blum, S, Gomel, N, Fabian, ID, Goldberg, H, Kapelushnik, N, Madgar, S, Vishnevskia-Dai, V, Frenkel, S, Pe'er, J, Gorfine, M, Refaeli, D, Steinberg, DM, Lavy, Y, Toledano, H, Caspi, S, De Francesco, S, Hadjistilianou, T, Ida, R, Valente, P, Midena, E, Parrozzani, R, Cowan-Lyn, KE, Vaughan, LO, Suzuki, S, Mohammad, MT, Yousef, YA, Manzhuova, L, Atsiaya, R, Matende, IO, Begimkulova, AS, Makimbetov, EK, Keomisy, J, Sayalith, P, Valeina, S, Viksnins, M, Al-Haddad, CE, Saab, RH, Alsawidi, KM, Elbahi, AM, Krivaitiene, D, Tateshi, B, Randrianarisoa, HL, Raobela, L, Msukwa, G, Nyirenda, C, Hamzah, N, Teh, KH, Sylla, F, Traore, F, Cheikh, SS, Zein, E, Perez, GG, Sanchez Orozco, AJ, Ortega-Hernandez, M, Ramirez-Ortiz, MA, Chuluunbat, T, Abdallah, E, Benmiloud, S, El Kettani, A, Hessissen, L, Almeida, AA, Limbu, B, Rajkarnikar, P, Saiju, R, Moll, AC, Wijsard, MVH, Cockcroft, RL, Ng, Y, Dodgshun, AJ, Calderon-Sotelo, P, Abdullahi, SU, Hassan, S, Umar, AB, Abdulrahaman, AA, Wali, AH, Ademola-Popoola, DS, Adio, A, Aghaji, AE, Ezegwui, IR, Akinsete, A, Musa, KO, Fasina, O, Ibanga, A, Nkanga, ED, Mustapha, T, Ribadu, D, Hummelen, M, Ahmad, A, Mushtaq, A, Qayyum, S, Chaudhry, S, Fadoo, Z, Jeeva, I, Masud, S, Hamid, SA, Zia, N, Siddiqui, SN, Janjua, T, Yaqub, MA, Khaqan, HA, Quintero D, K, Yee, R, Jairaj, V, Cano, MR, Fernandez, DDPG, Diaz Coronado, RY, Zapata Lopez, AM, Garcia, JL, Ponce, J, Garcia Pacheco, HN, Pascual Morales, CR, Vasquez Anchaya, JK, Tarrillo Leiva, FF, Alcasabas, APA, Mercado, GJ, Cieslik, K, Hautz, W, Rogowska, A, Castela, G, Silva, S, Jo, DH, Kim, JH, Comsa, C, Dragomir, MD, Neroev, V, Saakyan, S, Polyakov, V, Ushakova, TL, Yarovaya, VA, Yarovoy, AA, Theophile, T, Al Mesfer, S, Maktabi, A, Al-Dahmash, SA, Alkatan, HM, Moreira, C, Roth, PAN, Ilic, VR, Nikitovic, M, Latinovic, S, Quah, B, Tan, D, Hederova, S, Husakova, K, Groznik, AL, Pompe, MT, Davidson, A, Du Bruyn, M, Du Plessis, J, Stones, DK, Geel, JA, Myezo, KH, Kruger, M, Mayet, I, Naidu, G, Naidu, N, Mustak, H, Reynders, D, Wetter, J, Alarcon Portabella, S, Martin-Begue, N, Wolley Dod, C, Balaguer, J, Barranco, H, Catala-Mora, J, Correa Llano, MG, Fernandez-Teijeiro, A, Garcia Aldana, D, Peralta Calvo, J, San Roman Pacheco, S, Gunasekera, DS, Elhassan, MMA, Mohamedani, AA, All-Eriksson, C, Bartuma, K, Popovic, MB, Munier, FL, Liu, C-H, Chiwanga, FS, Kyara, A, Mndeme, FG, Msina, MS, Scanlan, TA, Atchaneeyasakul, L-O, Buaboonnam, J, Dangboon, W, Singha, P, Hongeng, S, Kulvichit, K, Rojanaporn, D, Surukrattanaskul, S, Wangtiraumnuay, N, Wiwatwongwana, A, Wiwatwongwana, D, Wongwai, P, Sharma, MK, Guedenon, KM, Bouguila, H, Atalay, HT, Hasanreisoglu, M, Ataseven, E, Kantar, M, Gunduz, AK, Kebudi, R, Kiratli, H, Koc, I, Tuncer, S, Unal, E, Kalinaki, A, Matua, M, Waddell, K, Musika, AA, Ssali, G, Al Harby, L, Reddy, MA, Astbury, NJ, Bascaran, C, Bowman, R, Burton, MJ, Foster, A, Zondervan, M, Sagoo, MS, Bobrova, N, Sorochynska, T, Lysytsia, L, Castillo, L, Afshar, AR, Berry, JL, Kim, JW, Randhawa, JK, Binkley, E, Boldt, HC, Larson, SA, Brennan, RC, Chandramohan, A, Stacey, AW, Corson, TW, Plager, DA, Davanzo, JM, Singh, AD, Demirci, H, Ericksen, C, Magrath, GN, Gold, AS, Murray, TG, Gonzalez, E, Shah, AS, Hansen, ED, Hartnett, ME, Harbour, JW, Hubbard, GB, Uner, OE, Laurenti, KD, Mets, MB, Leverant, AA, Ramasubramanian, A, Luna-Fineman, S, Miller, A, Skalet, AH, Mruthyunjaya, P, Hassan, M, Oliver, SC, Shields, CL, Yaghy, A, Stahl, ED, Wilson, MW, Villegas, VM, Islamov, Z, Usmanov, RH, Graells, J, Romero, L, Pham, CTM, Trang, DL, Al-Hussaini, HH, Thawaba, ADM, Muma, KIM, Nyaywa, M, Alia, DB, Tandili, A, Paiva, L, Wime, AD, Chantada, GL, Fandino, AC, Sgroi, M, Papyan, R, Tamamyan, G, Camuglia, JE, Gole, GA, Clark, A, Lam, GC, Elder, JE, McKenzie, JD, Staffieri, SE, Jones, MM, Manudhane, R, Sia, D, Ritter-Sovinz, P, Schwab, C, Balayeva, R, Khan, Z, Nuruddin, M, Roy, SR, Rashid, R, Sultana, S, Shakoor, SA, Naumenko, L, Zhilyaeva, K, Bartoszek, P, Brichard, BG, De Potter, P, Bio, AIA, Salas, B, Coleoni Suarez, ME, Mbumba, FB, Bonanomi, MTBC, Donato Macedo, CR, Grigorovski, NDAK, Mattosinho, CCDS, Teixeira, LF, Oscar, AH, Veleva-Krasteva, NV, Bouda, GC, Kabore, RL, Philbert, R, Evina, TGA, Nkumbe, HE, Kamsang, P, Muyen, OM, Dimaras, H, Mallipatna, A, Hamel, P, Superstein, R, Paton, KE, Strahlendorf, C, Palet, JEKK, Tyau-Tyau, H, Cavieres, I, Lopez, JP, Oporto, J, Ossandon, D, Chen, W, Xiang, D, Du, Y, Li, K, Ji, X, Tang, J, Li, C, Xu, B, Qian, J, Xue, K, Sun, X, Wang, Y-Z, Zhang, Y, Wu, S-Q, Xiao, Y, Yang, H, Ye, H, Polania, RA, Berete, RC, Couitchere, L, Peric, S, Alemany-Rubio, E, Gonzalez-Rodriguez, L, Autrata, R, Kepak, T, Pochop, P, Svojgr, K, Gregersen, PA, Urbak, SF, Montero, MM, Budiongo, A, Yanga, JM, Amani, TBK, Lukamba, RM, Numbi, MN, Calle Jara, DA, Villacis Chafla, EG, Sanchez, GL, Abouelnaga, S, Afifi, MA, Elhaddad, AM, Ali, AM, Elzembely, M, Said, AMA, Ziko, OAO, Fuentes-Alabi, SL, Goenz, MA, Eerme, K, Klett, A, Hordofa, DF, Mengesha, AA, Sherief, ST, Kivela, TT, Nummi, K, Cassoux, N, Desjardins, L, Obono-Obiang, G, Kardava, T, Khotenashvili, Z, Bechrakis, NE, Biewald, EM, Schlueter, S, Ketteler, P, Amankwaa-Frempong, D, Essuman, VA, Paintsil, V, Renner, LA, Alejos, A, Giron, A, Carreras, YA, Fu, LD, Maldonado, C, Wong, ES, Yam, JC, Csoka, M, Maka, E, Aggarwal, P, Gupta, V, Bhaduri, A, Bhattacharyya, A, Das, A, Chawla, B, Das, P, Das, S, Gupta, H, Gupta, S, Verma, N, Kaliki, S, Khetan, V, Maitra, P, Mahajan, A, Menon, V, Mishra, DKC, Palanivelu, MS, Ramanjulu, R, Mudaliar, SS, Nair, AG, Natarajan, S, Seth, R, Singh, U, Bhat, S, Dudeja, G, Tripathy, D, Akib, IMNR, Pagarra, H, Amiruddin, PO, Kuntorini, MW, Armytasari, I, Supriyadi, E, Sutyawan, IWE, Yuliawati, P, Lutfi, D, Soebagjo, HD, Rahman, A, Sitorus, RS, Victor, AA, Tehuteru, ES, Widiarti, W, Nency, YM, Faranoush, M, Mehrvar, A, Tashvighi, M, Sedaghat, A, Ghassemi, F, Khodabande, A, Abdulqader, RA, Al-Shaheen, AASM, Al Ani, MH, Haydar, H, Al-Badri, SAF, Al-Jadiry, MF, Sabhan, AH, Al-Jumaily, U, Al-Mafrachi, AARM, Al-Shammary, EH, Al-Janabi, ANH, Qadir, AO, Capra, M, Blum, S, Gomel, N, Fabian, ID, Goldberg, H, Kapelushnik, N, Madgar, S, Vishnevskia-Dai, V, Frenkel, S, Pe'er, J, Gorfine, M, Refaeli, D, Steinberg, DM, Lavy, Y, Toledano, H, Caspi, S, De Francesco, S, Hadjistilianou, T, Ida, R, Valente, P, Midena, E, Parrozzani, R, Cowan-Lyn, KE, Vaughan, LO, Suzuki, S, Mohammad, MT, Yousef, YA, Manzhuova, L, Atsiaya, R, Matende, IO, Begimkulova, AS, Makimbetov, EK, Keomisy, J, Sayalith, P, Valeina, S, Viksnins, M, Al-Haddad, CE, Saab, RH, Alsawidi, KM, Elbahi, AM, Krivaitiene, D, Tateshi, B, Randrianarisoa, HL, Raobela, L, Msukwa, G, Nyirenda, C, Hamzah, N, Teh, KH, Sylla, F, Traore, F, Cheikh, SS, Zein, E, Perez, GG, Sanchez Orozco, AJ, Ortega-Hernandez, M, Ramirez-Ortiz, MA, Chuluunbat, T, Abdallah, E, Benmiloud, S, El Kettani, A, Hessissen, L, Almeida, AA, Limbu, B, Rajkarnikar, P, Saiju, R, Moll, AC, Wijsard, MVH, Cockcroft, RL, Ng, Y, Dodgshun, AJ, Calderon-Sotelo, P, Abdullahi, SU, Hassan, S, Umar, AB, Abdulrahaman, AA, Wali, AH, Ademola-Popoola, DS, Adio, A, Aghaji, AE, Ezegwui, IR, Akinsete, A, Musa, KO, Fasina, O, Ibanga, A, Nkanga, ED, Mustapha, T, Ribadu, D, Hummelen, M, Ahmad, A, Mushtaq, A, Qayyum, S, Chaudhry, S, Fadoo, Z, Jeeva, I, Masud, S, Hamid, SA, Zia, N, Siddiqui, SN, Janjua, T, Yaqub, MA, Khaqan, HA, Quintero D, K, Yee, R, Jairaj, V, Cano, MR, Fernandez, DDPG, Diaz Coronado, RY, Zapata Lopez, AM, Garcia, JL, Ponce, J, Garcia Pacheco, HN, Pascual Morales, CR, Vasquez Anchaya, JK, Tarrillo Leiva, FF, Alcasabas, APA, Mercado, GJ, Cieslik, K, Hautz, W, Rogowska, A, Castela, G, Silva, S, Jo, DH, Kim, JH, Comsa, C, Dragomir, MD, Neroev, V, Saakyan, S, Polyakov, V, Ushakova, TL, Yarovaya, VA, Yarovoy, AA, Theophile, T, Al Mesfer, S, Maktabi, A, Al-Dahmash, SA, Alkatan, HM, Moreira, C, Roth, PAN, Ilic, VR, Nikitovic, M, Latinovic, S, Quah, B, Tan, D, Hederova, S, Husakova, K, Groznik, AL, Pompe, MT, Davidson, A, Du Bruyn, M, Du Plessis, J, Stones, DK, Geel, JA, Myezo, KH, Kruger, M, Mayet, I, Naidu, G, Naidu, N, Mustak, H, Reynders, D, Wetter, J, Alarcon Portabella, S, Martin-Begue, N, Wolley Dod, C, Balaguer, J, Barranco, H, Catala-Mora, J, Correa Llano, MG, Fernandez-Teijeiro, A, Garcia Aldana, D, Peralta Calvo, J, San Roman Pacheco, S, Gunasekera, DS, Elhassan, MMA, Mohamedani, AA, All-Eriksson, C, Bartuma, K, Popovic, MB, Munier, FL, Liu, C-H, Chiwanga, FS, Kyara, A, Mndeme, FG, Msina, MS, Scanlan, TA, Atchaneeyasakul, L-O, Buaboonnam, J, Dangboon, W, Singha, P, Hongeng, S, Kulvichit, K, Rojanaporn, D, Surukrattanaskul, S, Wangtiraumnuay, N, Wiwatwongwana, A, Wiwatwongwana, D, Wongwai, P, Sharma, MK, Guedenon, KM, Bouguila, H, Atalay, HT, Hasanreisoglu, M, Ataseven, E, Kantar, M, Gunduz, AK, Kebudi, R, Kiratli, H, Koc, I, Tuncer, S, Unal, E, Kalinaki, A, Matua, M, Waddell, K, Musika, AA, Ssali, G, Al Harby, L, Reddy, MA, Astbury, NJ, Bascaran, C, Bowman, R, Burton, MJ, Foster, A, Zondervan, M, Sagoo, MS, Bobrova, N, Sorochynska, T, Lysytsia, L, Castillo, L, Afshar, AR, Berry, JL, Kim, JW, Randhawa, JK, Binkley, E, Boldt, HC, Larson, SA, Brennan, RC, Chandramohan, A, Stacey, AW, Corson, TW, Plager, DA, Davanzo, JM, Singh, AD, Demirci, H, Ericksen, C, Magrath, GN, Gold, AS, Murray, TG, Gonzalez, E, Shah, AS, Hansen, ED, Hartnett, ME, Harbour, JW, Hubbard, GB, Uner, OE, Laurenti, KD, Mets, MB, Leverant, AA, Ramasubramanian, A, Luna-Fineman, S, Miller, A, Skalet, AH, Mruthyunjaya, P, Hassan, M, Oliver, SC, Shields, CL, Yaghy, A, Stahl, ED, Wilson, MW, Villegas, VM, Islamov, Z, Usmanov, RH, Graells, J, Romero, L, Pham, CTM, Trang, DL, Al-Hussaini, HH, Thawaba, ADM, Muma, KIM, and Nyaywa, M

Abstract

BACKGROUND: Retinoblastoma is the most common intraocular cancer worldwide. There is some evidence to suggest that major differences exist in treatment outcomes for children with retinoblastoma from different regions, but these differences have not been assessed on a global scale. We aimed to report 3-year outcomes for children with retinoblastoma globally and to investigate factors associated with survival. METHODS: We did a prospective cluster-based analysis of treatment-naive patients with retinoblastoma who were diagnosed between Jan 1, 2017, and Dec 31, 2017, then treated and followed up for 3 years. Patients were recruited from 260 specialised treatment centres worldwide. Data were obtained from participating centres on primary and additional treatments, duration of follow-up, metastasis, eye globe salvage, and survival outcome. We analysed time to death and time to enucleation with Cox regression models. FINDINGS: The cohort included 4064 children from 149 countries. The median age at diagnosis was 23·2 months (IQR 11·0-36·5). Extraocular tumour spread (cT4 of the cTNMH classification) at diagnosis was reported in five (0·8%) of 636 children from high-income countries, 55 (5·4%) of 1027 children from upper-middle-income countries, 342 (19·7%) of 1738 children from lower-middle-income countries, and 196 (42·9%) of 457 children from low-income countries. Enucleation surgery was available for all children and intravenous chemotherapy was available for 4014 (98·8%) of 4064 children. The 3-year survival rate was 99·5% (95% CI 98·8-100·0) for children from high-income countries, 91·2% (89·5-93·0) for children from upper-middle-income countries, 80·3% (78·3-82·3) for children from lower-middle-income countries, and 57·3% (52·1-63·0) for children from low-income countries. On analysis, independent factors for worse survival were residence in low-income countries compared to high-income countries (hazard ratio 16·67; 95% CI 4·76-50·00), cT4 advanced tumour compared to

Published
2022

2. Global Retinoblastoma Presentation and Analysis by National Income Level

Author

Fabian, ID, Abdallah, E, Abdullahi, SU, Abdulqader, RA, Boubacar, SA, Ademola-Popoola, DS, Adio, A, Afshar, AR, Aggarwal, P, Aghaji, AE, Ahmad, A, Akib, MNR, Al Harby, L, Al Ani, MH, Alakbarova, A, Portabella, SA, Al-Badri, SAF, Alcasabas, APA, Al-Dahmash, SA, Alejos, A, Alemany-Rubio, E, Bio, AIA, Carreras, YA, Al-Haddad, C, Al-Hussaini, HHY, Ali, AM, Alia, DB, Al-Jadiry, MF, Al-Jumaly, U, Alkatan, HM, All-Eriksson, C, Al-Mafrachi, AARM, Almeida, AA, Alsawidi, KM, Al-Shaheen, AASM, Al-Shammary, EH, Amiruddin, PO, Antonino, R, Astbury, NJ, Atalay, HT, Atchaneeyasakul, L-O, Atsiaya, R, Attaseth, T, Aung, TH, Ayala, S, Baizakova, B, Balaguer, J, Balayeva, R, Balwierz, W, Barranco, H, Bascaran, C, Popovic, MB, Benavides, R, Benmiloud, S, Guebessi, NB, Berete, RC, Berry, JL, Bhaduri, A, Bhat, S, Biddulph, SJ, Biewald, EM, Bobrova, N, Boehme, M, Boldt, HC, Bonanomi, MTBC, Bornfeld, N, Bouda, GC, Bouguila, H, Boumedane, A, Brennan, RC, Brichard, BG, Buaboonnam, J, Calderon-Sotelo, P, Calle Jara, DA, Camuglia, JE, Cano, MR, Capra, M, Cassoux, N, Castela, G, Castillo, L, Catala-Mora, J, Chantada, GL, Chaudhry, S, Chaugule, SS, Chauhan, A, Chawla, B, Chernodrinska, VS, Chiwanga, FS, Chuluunbat, T, Cieslik, K, Cockcroft, RL, Comsa, C, Correa, ZM, Correa Llano, MG, Corson, TW, Cowan-Lyn, KE, Csoka, M, Cui, X, Da Gama, I, Dangboon, W, Das, A, Das, S, Davanzo, JM, Davidson, A, De Potter, P, Delgado, KQ, Demirci, H, Desjardins, L, Diaz Coronado, RY, Dimaras, H, Dodgshun, AJ, Donaldson, C, Donato Macedo, CR, Dragomir, MD, Du, Y, Du Bruyn, M, Edison, KS, Sutyawan, IWE, El Kettani, A, Elbahi, AM, Elder, JE, Elgalaly, D, Elhaddad, AM, Elhassan, MMA, Elzembely, MM, Essuman, VA, Evina, TGA, Fadoo, Z, Fandino, AC, Faranoush, M, Fasina, O, Fernandez, DDPG, Fernandez-Teijeiro, A, Foster, A, Frenkel, S, Fu, LD, Fuentes-Alabi, SL, Gallie, BL, Gandiwa, M, Garcia, JL, Garcia Aldana, D, Gassant, PY, Geel, JA, Ghassemi, F, Giron, A, Gizachew, Z, Goenz, MA, Gold, AS, Goldberg-Lavid, M, Gole, GA, Gomel, N, Gonzalez, E, Gonzalez Perez, G, Gonzalez-Rodriguez, L, Garcia Pacheco, HN, Graells, J, Green, L, Gregersen, PA, Grigorovski, NDAK, Guedenon, KM, Gunasekera, DS, Gunduz, AK, Gupta, H, Gupta, S, Hadjistilianou, T, Hamel, P, Hamid, SA, Hamzah, N, Hansen, ED, Harbour, JW, Hartnett, ME, Hasanreisoglu, M, Hassan, S, Hederova, S, Hernandez, J, Carcamo Hernandez, LM, Hessissen, L, Hordofa, DF, Huang, LC, Hubbard, GB, Hummlen, M, Husakova, K, Al-Janabi, ANH, Ida, R, Ilic, VR, Jairaj, V, Jeeva, I, Jenkinson, H, Ji, X, Jo, DH, Johnson, KP, Johnson, WJ, Jones, MM, Kabesha, TBA, Kabore, RL, Kaliki, S, Kalinaki, A, Kantar, M, Kao, L-Y, Kardava, T, Kebudi, R, Kepak, T, Keren-Froim, N, Khan, ZJ, Khaqan, HA, Khauv, P, Kheir, WJ, Khetan, V, Khodabande, A, Khotenashvili, Z, Kim, JW, Kim, JH, Kiratli, H, Kivela, TT, Klett, A, Palet, JEKK, Krivaitiene, D, Kruger, M, Kulvichit, K, Kuntorini, MW, Kyara, A, Lachmann, ES, Lam, CPS, Lam, GC, Larson, SA, Latinovic, S, Laurenti, KD, Le, BHA, Lecuona, K, Leverant, AA, Li, C, Limbu, B, Quah, BL, Lopez, JP, Lukamba, RM, Lumbroso, L, Luna-Fineman, S, Lutfi, D, Lysytsia, L, Magrath, GN, Mahajan, A, Majeed, AR, Maka, E, Makan, M, Makimbetov, EK, Manda, C, Martin Begue, N, Mason, L, Mason, JO, Matende, IO, Materin, M, Mattosinho, CCDS, Matua, M, Mayet, I, Mbumba, FB, McKenzie, JD, Medina-Sanson, A, Mehrvar, A, Mengesha, AA, Menon, V, Mercado, GJVD, Mets, MB, Midena, E, Mishra, DKC, Mndeme, FG, Mohamedani, AA, Mohammad, MT, Moll, AC, Montero, MM, Morales, RA, Moreira, C, Mruthyunjaya, P, Msina, MS, Msukwa, G, Mudaliar, SS, Muma, K, Munier, FL, Murgoi, G, Murray, TG, Musa, KO, Mushtaq, A, Mustak, H, Muyen, OM, Naidu, G, Nair, AG, Naumenko, L, Roth, PAN, Nency, YM, Neroev, V, Ngo, H, Nieves, RM, Nikitovic, M, Nkanga, ED, Nkumbe, H, Nuruddin, M, Nyaywa, M, Obono-Obiang, G, Oguego, NC, Olechowski, A, Oliver, SCN, Osei-Bonsu, P, Ossandon, D, Paez-Escamilla, MA, Pagarra, H, Painter, SL, Paintsil, V, Paiva, L, Pal, BP, Palanivelu, MS, Papyan, R, Parrozzani, R, Parulekar, M, Morales, CRP, Paton, KE, Pawinska-Wasikowska, K, Pe'er, J, Pena, A, Peric, S, Pham, CTM, Philbert, R, Plager, DA, Pochop, P, Polania, RA, Polyakov, VG, Pompe, MT, Pons, JJ, Prat, D, Prom, V, Purwanto, I, Qadir, AO, Qayyum, S, Qian, J, Rahman, A, Rahman, S, Rahmat, J, Rajkarnikar, P, Ramanjulu, R, Ramasubramanian, A, Ramirez-Ortiz, MA, Raobela, L, Rashid, R, Reddy, MA, Reich, E, Renner, LA, Reynders, D, Ribadu, D, Riheia, MM, Ritter-Sovinz, P, Rojanaporn, D, Romero, L, Roy, SR, Saab, RH, Saakyan, S, Sabhan, AH, Sagoo, MS, Said, AMA, Saiju, R, Salas, B, San Roman Pacheco, S, Sanchez, GL, Sayalith, P, Scanlan, TA, Schefler, AC, Schoeman, J, Sedaghat, A, Seregard, S, Seth, R, Shah, AS, Shakoor, SA, Sharma, MK, Sherief, ST, Shetye, NG, Shields, CL, Siddiqui, SN, Cheikh, SS, Silva, S, Singh, AD, Singh, N, Singh, U, Singha, P, Sitorus, RS, Skalet, AH, Soebagjo, HD, Sorochynska, T, Ssali, G, Stacey, AW, Staffieri, SE, Stahl, ED, Stathopoulos, C, Kranjc, BS, Stones, DK, Strahlendorf, C, Suarez, MEC, Sultana, S, Sun, X, Sundy, M, Superstein, R, Supriyadi, E, Surukrattanaskul, S, Suzuki, S, Svojgr, K, Sylla, F, Tamamyan, G, Tan, D, Tandili, A, Tarrillo Leiva, FF, Tashvighi, M, Tateshi, B, Tehuteru, ES, Teixeira, LF, Teh, KH, Theophile, T, Toledano, H, Trang, DL, Traore, F, Trichaiyaporn, S, Tuncer, S, Tyau-Tyau, H, Umar, AB, Unal, E, Uner, OE, Urbak, SF, Ushakova, TL, Usmanov, RH, Valeina, S, Wijsard, MVH, Varadisai, A, Vasquez, L, Vaughan, LO, Veleva-Krasteva, NV, Verma, N, Victor, AA, Viksnins, M, Villacos Chafla, EG, Vishnevskia-Dai, V, Vora, T, Wachtel, AE, Wackernagel, W, Waddell, K, Wade, PD, Wali, AH, Wang, Y-Z, Weiss, A, Wilson, MW, Wime, ADC, Wiwatwongwana, A, Wiwatwongwana, D, Dod, CW, Wongwai, P, Xiang, D, Xiao, Y, Yam, JC, Yang, H, Yanga, JM, Yaqub, MA, Yarovaya, VA, Yarovoy, AA, Ye, H, Yousef, YA, Yuliawati, P, Zapata Lopez, AM, Zein, E, Zhang, C, Zhang, Y, Zhao, J, Zheng, X, Zhilyaeva, K, Zia, N, Ziko, OAO, Zondervan, M, Bowman, R, Fabian, ID, Abdallah, E, Abdullahi, SU, Abdulqader, RA, Boubacar, SA, Ademola-Popoola, DS, Adio, A, Afshar, AR, Aggarwal, P, Aghaji, AE, Ahmad, A, Akib, MNR, Al Harby, L, Al Ani, MH, Alakbarova, A, Portabella, SA, Al-Badri, SAF, Alcasabas, APA, Al-Dahmash, SA, Alejos, A, Alemany-Rubio, E, Bio, AIA, Carreras, YA, Al-Haddad, C, Al-Hussaini, HHY, Ali, AM, Alia, DB, Al-Jadiry, MF, Al-Jumaly, U, Alkatan, HM, All-Eriksson, C, Al-Mafrachi, AARM, Almeida, AA, Alsawidi, KM, Al-Shaheen, AASM, Al-Shammary, EH, Amiruddin, PO, Antonino, R, Astbury, NJ, Atalay, HT, Atchaneeyasakul, L-O, Atsiaya, R, Attaseth, T, Aung, TH, Ayala, S, Baizakova, B, Balaguer, J, Balayeva, R, Balwierz, W, Barranco, H, Bascaran, C, Popovic, MB, Benavides, R, Benmiloud, S, Guebessi, NB, Berete, RC, Berry, JL, Bhaduri, A, Bhat, S, Biddulph, SJ, Biewald, EM, Bobrova, N, Boehme, M, Boldt, HC, Bonanomi, MTBC, Bornfeld, N, Bouda, GC, Bouguila, H, Boumedane, A, Brennan, RC, Brichard, BG, Buaboonnam, J, Calderon-Sotelo, P, Calle Jara, DA, Camuglia, JE, Cano, MR, Capra, M, Cassoux, N, Castela, G, Castillo, L, Catala-Mora, J, Chantada, GL, Chaudhry, S, Chaugule, SS, Chauhan, A, Chawla, B, Chernodrinska, VS, Chiwanga, FS, Chuluunbat, T, Cieslik, K, Cockcroft, RL, Comsa, C, Correa, ZM, Correa Llano, MG, Corson, TW, Cowan-Lyn, KE, Csoka, M, Cui, X, Da Gama, I, Dangboon, W, Das, A, Das, S, Davanzo, JM, Davidson, A, De Potter, P, Delgado, KQ, Demirci, H, Desjardins, L, Diaz Coronado, RY, Dimaras, H, Dodgshun, AJ, Donaldson, C, Donato Macedo, CR, Dragomir, MD, Du, Y, Du Bruyn, M, Edison, KS, Sutyawan, IWE, El Kettani, A, Elbahi, AM, Elder, JE, Elgalaly, D, Elhaddad, AM, Elhassan, MMA, Elzembely, MM, Essuman, VA, Evina, TGA, Fadoo, Z, Fandino, AC, Faranoush, M, Fasina, O, Fernandez, DDPG, Fernandez-Teijeiro, A, Foster, A, Frenkel, S, Fu, LD, Fuentes-Alabi, SL, Gallie, BL, Gandiwa, M, Garcia, JL, Garcia Aldana, D, Gassant, PY, Geel, JA, Ghassemi, F, Giron, A, Gizachew, Z, Goenz, MA, Gold, AS, Goldberg-Lavid, M, Gole, GA, Gomel, N, Gonzalez, E, Gonzalez Perez, G, Gonzalez-Rodriguez, L, Garcia Pacheco, HN, Graells, J, Green, L, Gregersen, PA, Grigorovski, NDAK, Guedenon, KM, Gunasekera, DS, Gunduz, AK, Gupta, H, Gupta, S, Hadjistilianou, T, Hamel, P, Hamid, SA, Hamzah, N, Hansen, ED, Harbour, JW, Hartnett, ME, Hasanreisoglu, M, Hassan, S, Hederova, S, Hernandez, J, Carcamo Hernandez, LM, Hessissen, L, Hordofa, DF, Huang, LC, Hubbard, GB, Hummlen, M, Husakova, K, Al-Janabi, ANH, Ida, R, Ilic, VR, Jairaj, V, Jeeva, I, Jenkinson, H, Ji, X, Jo, DH, Johnson, KP, Johnson, WJ, Jones, MM, Kabesha, TBA, Kabore, RL, Kaliki, S, Kalinaki, A, Kantar, M, Kao, L-Y, Kardava, T, Kebudi, R, Kepak, T, Keren-Froim, N, Khan, ZJ, Khaqan, HA, Khauv, P, Kheir, WJ, Khetan, V, Khodabande, A, Khotenashvili, Z, Kim, JW, Kim, JH, Kiratli, H, Kivela, TT, Klett, A, Palet, JEKK, Krivaitiene, D, Kruger, M, Kulvichit, K, Kuntorini, MW, Kyara, A, Lachmann, ES, Lam, CPS, Lam, GC, Larson, SA, Latinovic, S, Laurenti, KD, Le, BHA, Lecuona, K, Leverant, AA, Li, C, Limbu, B, Quah, BL, Lopez, JP, Lukamba, RM, Lumbroso, L, Luna-Fineman, S, Lutfi, D, Lysytsia, L, Magrath, GN, Mahajan, A, Majeed, AR, Maka, E, Makan, M, Makimbetov, EK, Manda, C, Martin Begue, N, Mason, L, Mason, JO, Matende, IO, Materin, M, Mattosinho, CCDS, Matua, M, Mayet, I, Mbumba, FB, McKenzie, JD, Medina-Sanson, A, Mehrvar, A, Mengesha, AA, Menon, V, Mercado, GJVD, Mets, MB, Midena, E, Mishra, DKC, Mndeme, FG, Mohamedani, AA, Mohammad, MT, Moll, AC, Montero, MM, Morales, RA, Moreira, C, Mruthyunjaya, P, Msina, MS, Msukwa, G, Mudaliar, SS, Muma, K, Munier, FL, Murgoi, G, Murray, TG, Musa, KO, Mushtaq, A, Mustak, H, Muyen, OM, Naidu, G, Nair, AG, Naumenko, L, Roth, PAN, Nency, YM, Neroev, V, Ngo, H, Nieves, RM, Nikitovic, M, Nkanga, ED, Nkumbe, H, Nuruddin, M, Nyaywa, M, Obono-Obiang, G, Oguego, NC, Olechowski, A, Oliver, SCN, Osei-Bonsu, P, Ossandon, D, Paez-Escamilla, MA, Pagarra, H, Painter, SL, Paintsil, V, Paiva, L, Pal, BP, Palanivelu, MS, Papyan, R, Parrozzani, R, Parulekar, M, Morales, CRP, Paton, KE, Pawinska-Wasikowska, K, Pe'er, J, Pena, A, Peric, S, Pham, CTM, Philbert, R, Plager, DA, Pochop, P, Polania, RA, Polyakov, VG, Pompe, MT, Pons, JJ, Prat, D, Prom, V, Purwanto, I, Qadir, AO, Qayyum, S, Qian, J, Rahman, A, Rahman, S, Rahmat, J, Rajkarnikar, P, Ramanjulu, R, Ramasubramanian, A, Ramirez-Ortiz, MA, Raobela, L, Rashid, R, Reddy, MA, Reich, E, Renner, LA, Reynders, D, Ribadu, D, Riheia, MM, Ritter-Sovinz, P, Rojanaporn, D, Romero, L, Roy, SR, Saab, RH, Saakyan, S, Sabhan, AH, Sagoo, MS, Said, AMA, Saiju, R, Salas, B, San Roman Pacheco, S, Sanchez, GL, Sayalith, P, Scanlan, TA, Schefler, AC, Schoeman, J, Sedaghat, A, Seregard, S, Seth, R, Shah, AS, Shakoor, SA, Sharma, MK, Sherief, ST, Shetye, NG, Shields, CL, Siddiqui, SN, Cheikh, SS, Silva, S, Singh, AD, Singh, N, Singh, U, Singha, P, Sitorus, RS, Skalet, AH, Soebagjo, HD, Sorochynska, T, Ssali, G, Stacey, AW, Staffieri, SE, Stahl, ED, Stathopoulos, C, Kranjc, BS, Stones, DK, Strahlendorf, C, Suarez, MEC, Sultana, S, Sun, X, Sundy, M, Superstein, R, Supriyadi, E, Surukrattanaskul, S, Suzuki, S, Svojgr, K, Sylla, F, Tamamyan, G, Tan, D, Tandili, A, Tarrillo Leiva, FF, Tashvighi, M, Tateshi, B, Tehuteru, ES, Teixeira, LF, Teh, KH, Theophile, T, Toledano, H, Trang, DL, Traore, F, Trichaiyaporn, S, Tuncer, S, Tyau-Tyau, H, Umar, AB, Unal, E, Uner, OE, Urbak, SF, Ushakova, TL, Usmanov, RH, Valeina, S, Wijsard, MVH, Varadisai, A, Vasquez, L, Vaughan, LO, Veleva-Krasteva, NV, Verma, N, Victor, AA, Viksnins, M, Villacos Chafla, EG, Vishnevskia-Dai, V, Vora, T, Wachtel, AE, Wackernagel, W, Waddell, K, Wade, PD, Wali, AH, Wang, Y-Z, Weiss, A, Wilson, MW, Wime, ADC, Wiwatwongwana, A, Wiwatwongwana, D, Dod, CW, Wongwai, P, Xiang, D, Xiao, Y, Yam, JC, Yang, H, Yanga, JM, Yaqub, MA, Yarovaya, VA, Yarovoy, AA, Ye, H, Yousef, YA, Yuliawati, P, Zapata Lopez, AM, Zein, E, Zhang, C, Zhang, Y, Zhao, J, Zheng, X, Zhilyaeva, K, Zia, N, Ziko, OAO, Zondervan, M, and Bowman, R

Abstract

IMPORTANCE: Early diagnosis of retinoblastoma, the most common intraocular cancer, can save both a child's life and vision. However, anecdotal evidence suggests that many children across the world are diagnosed late. To our knowledge, the clinical presentation of retinoblastoma has never been assessed on a global scale. OBJECTIVES: To report the retinoblastoma stage at diagnosis in patients across the world during a single year, to investigate associations between clinical variables and national income level, and to investigate risk factors for advanced disease at diagnosis. DESIGN, SETTING, AND PARTICIPANTS: A total of 278 retinoblastoma treatment centers were recruited from June 2017 through December 2018 to participate in a cross-sectional analysis of treatment-naive patients with retinoblastoma who were diagnosed in 2017. MAIN OUTCOMES AND MEASURES: Age at presentation, proportion of familial history of retinoblastoma, and tumor stage and metastasis. RESULTS: The cohort included 4351 new patients from 153 countries; the median age at diagnosis was 30.5 (interquartile range, 18.3-45.9) months, and 1976 patients (45.4%) were female. Most patients (n = 3685 [84.7%]) were from low- and middle-income countries (LMICs). Globally, the most common indication for referral was leukocoria (n = 2638 [62.8%]), followed by strabismus (n = 429 [10.2%]) and proptosis (n = 309 [7.4%]). Patients from high-income countries (HICs) were diagnosed at a median age of 14.1 months, with 656 of 666 (98.5%) patients having intraocular retinoblastoma and 2 (0.3%) having metastasis. Patients from low-income countries were diagnosed at a median age of 30.5 months, with 256 of 521 (49.1%) having extraocular retinoblastoma and 94 of 498 (18.9%) having metastasis. Lower national income level was associated with older presentation age, higher proportion of locally advanced disease and distant metastasis, and smaller proportion of familial history of retinoblastoma. Advanced disease at diagnosis

Published
2020

3. Travel burden and clinical presentation of retinoblastoma: analysis of 1024 patients from 43 African countries and 518 patients from 40 European countries.

Author

Fabian ID, Stacey AW, Foster A, Kivelä TT, Munier FL, Keren-Froim N, Gomel N, Cassoux N, Sagoo MS, Reddy MA, Harby LA, Zondervan M, Bascaran C, Abdallah E, Abdullahi SU, Boubacar SA, Ademola-Popoola DS, Adio A, Aghaji AE, Portabella SA, Alfa Bio AI, Ali AM, Alia DB, All-Eriksson C, Almeida AA, Alsawidi KM, Antonino R, Astbury NJ, Atsiaya R, Balaguer J, Balwierz W, Barranco H, Popovic MB, Benmiloud S, Guebessi NB, Berete RC, Biddulph SJ, Biewald EM, Blum S, Bobrova N, Boehme M, Bornfeld N, Bouda GC, Bouguila H, Boumedane A, Brichard BG, L MC, Castela G, Català-Mora J, Chantada GL, Chernodrinska VS, Chiwanga FS, Cieslik K, Comsa C, Correa Llano MG, Csóka M, Da Gama IV, Davidson A, Potter P, Desjardins L, Dragomir MD, Bruyn MD, Kettani AE, Elbahi AM, Elgalaly D, Elhaddad AM, Ali Elhassan MM, Elzembely MM, Essuman VA, Evina TGA, Fasina O, Fernández-Teijeiro A, Gandiwa M, Aldana DG, Geel JA, Gizachew Z, Gregersen PA, Guedenon KM, Hadjistilianou T, Hassan S, Hederova S, Hessissen L, Hordofa DF, Hummlen M, Husakova K, Ida R, Ilic VR, Jenkinson H, Amani Kabesha TB, Kabore RL, Kalinaki A, Kapelushnik N, Kardava T, Kemilev PK, Kepak T, Khotenashvili Z, Klett A, Kosh Komba Palet JE, Krivaitiene D, Kruger M, Kyara A, Lachmann ES, Latinović S, Lecuona K, Lukamba RM, Lumbroso L, Lysytsia L, Maka E, Makan M, Manda C, Begue NM, Matende IO, Matua M, Mayet I, Mbumba FB, Mengesha AA, Midena E, Mndeme FG, Mohamedani AA, Moll AC, Moreira C, Msina MS, Msukwa G, Muma KI, Murgoi G, Musa KO, Mustak H, Muyen OM, Naidu G, Naumenko L, Ndoye Roth PA, Neroev V, Nikitovic M, Nkanga ED, Nkumbe H, Nyaywa M, Obono-Obiang G, Oguego NC, Olechowski A, Oscar AH, Osei-Bonsu P, Painter SL, Paintsil V, Paiva L, Papyan R, Parrozzani R, Parulekar M, Pawinska-Wasikowska K, Perić S, Philbert R, Pochop P, Polyakov VG, Pompe MT, Pons JJ, Raobela L, Renner LA, Reynders D, Ribadu D, Riheia MM, Ritter-Sovinz P, Saakyan S, Said AM, Román Pacheco SS, Scanlan TA, Schoeman J, Seregard S, Sherief ST, Cheikh SS, Silva S, Sorochynska T, Ssali G, Stathopoulos C, Kranjc BS, Stones DK, Svojgr K, Sylla F, Tamamyan G, Tandili A, Tateshi B, Theophile T, Traoré F, Tyau-Tyau H, Umar AB, Urbak SF, Ushakova TL, Valeina S, Hoefen Wijsard MV, Veleva-Krasteva NV, Viksnins M, Wackernagel W, Waddell K, Wade PD, Wali Nigeria AH, Wime AD, Dod CW, Yanga JM, Yarovaya VA, Yarovoy AA, Zein E, Sharabi S, Zhilyaeva K, Ziko OA, and Bowman R

Subjects
Africa epidemiology, Cross-Sectional Studies, Humans, Risk Factors, Retinal Neoplasms diagnosis, Retinal Neoplasms epidemiology, Retinoblastoma diagnosis, Retinoblastoma epidemiology
Abstract

Background: The travel distance from home to a treatment centre, which may impact the stage at diagnosis, has not been investigated for retinoblastoma, the most common childhood eye cancer. We aimed to investigate the travel burden and its impact on clinical presentation in a large sample of patients with retinoblastoma from Africa and Europe., Methods: A cross-sectional analysis including 518 treatment-naïve patients with retinoblastoma residing in 40 European countries and 1024 treatment-naïve patients with retinoblastoma residing in 43 African countries., Results: Capture rate was 42.2% of expected patients from Africa and 108.8% from Europe. African patients were older (95% CI -12.4 to -5.4, p<0.001), had fewer cases of familial retinoblastoma (95% CI 2.0 to 5.3, p<0.001) and presented with more advanced disease (95% CI 6.0 to 9.8, p<0.001); 43.4% and 15.4% of Africans had extraocular retinoblastoma and distant metastasis at the time of diagnosis, respectively, compared to 2.9% and 1.0% of the Europeans. To reach a retinoblastoma centre, European patients travelled 421.8 km compared to Africans who travelled 185.7 km (p<0.001). On regression analysis, lower-national income level, African residence and older age (p<0.001), but not travel distance (p=0.19), were risk factors for advanced disease., Conclusions: Fewer than half the expected number of patients with retinoblastoma presented to African referral centres in 2017, suggesting poor awareness or other barriers to access. Despite the relatively shorter distance travelled by African patients, they presented with later-stage disease. Health education about retinoblastoma is needed for carers and health workers in Africa in order to increase capture rate and promote early referral., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. No commercial re-use. See rights and permissions. Published by BMJ.)

Published
2021
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4. Global Retinoblastoma Presentation and Analysis by National Income Level.

Author

Fabian ID, Abdallah E, Abdullahi SU, Abdulqader RA, Adamou Boubacar S, Ademola-Popoola DS, Adio A, Afshar AR, Aggarwal P, Aghaji AE, Ahmad A, Akib MNR, Al Harby L, Al Ani MH, Alakbarova A, Portabella SA, Al-Badri SAF, Alcasabas APA, Al-Dahmash SA, Alejos A, Alemany-Rubio E, Alfa Bio AI, Alfonso Carreras Y, Al-Haddad C, Al-Hussaini HHY, Ali AM, Alia DB, Al-Jadiry MF, Al-Jumaily U, Alkatan HM, All-Eriksson C, Al-Mafrachi AARM, Almeida AA, Alsawidi KM, Al-Shaheen AASM, Al-Shammary EH, Amiruddin PO, Antonino R, Astbury NJ, Atalay HT, Atchaneeyasakul LO, Atsiaya R, Attaseth T, Aung TH, Ayala S, Baizakova B, Balaguer J, Balayeva R, Balwierz W, Barranco H, Bascaran C, Beck Popovic M, Benavides R, Benmiloud S, Bennani Guebessi N, Berete RC, Berry JL, Bhaduri A, Bhat S, Biddulph SJ, Biewald EM, Bobrova N, Boehme M, Boldt HC, Bonanomi MTBC, Bornfeld N, Bouda GC, Bouguila H, Boumedane A, Brennan RC, Brichard BG, Buaboonnam J, Calderón-Sotelo P, Calle Jara DA, Camuglia JE, Cano MR, Capra M, Cassoux N, Castela G, Castillo L, Català-Mora J, Chantada GL, Chaudhry S, Chaugule SS, Chauhan A, Chawla B, Chernodrinska VS, Chiwanga FS, Chuluunbat T, Cieslik K, Cockcroft RL, Comsa C, Correa ZM, Correa Llano MG, Corson TW, Cowan-Lyn KE, Csóka M, Cui X, Da Gama IV, Dangboon W, Das A, Das S, Davanzo JM, Davidson A, De Potter P, Delgado KQ, Demirci H, Desjardins L, Diaz Coronado RY, Dimaras H, Dodgshun AJ, Donaldson C, Donato Macedo CR, Dragomir MD, Du Y, Du Bruyn M, Edison KS, Eka Sutyawan IW, El Kettani A, Elbahi AM, Elder JE, Elgalaly D, Elhaddad AM, Elhassan MMA, Elzembely MM, Essuman VA, Evina TGA, Fadoo Z, Fandiño AC, Faranoush M, Fasina O, Fernández DDPG, Fernández-Teijeiro A, Foster A, Frenkel S, Fu LD, Fuentes-Alabi SL, Gallie BL, Gandiwa M, Garcia JL, García Aldana D, Gassant PY, Geel JA, Ghassemi F, Girón AV, Gizachew Z, Goenz MA, Gold AS, Goldberg-Lavid M, Gole GA, Gomel N, Gonzalez E, Gonzalez Perez G, González-Rodríguez L, Garcia Pacheco HN, Graells J, Green L, Gregersen PA, Grigorovski NDAK, Guedenon KM, Gunasekera DS, Gündüz AK, Gupta H, Gupta S, Hadjistilianou T, Hamel P, Hamid SA, Hamzah N, Hansen ED, Harbour JW, Hartnett ME, Hasanreisoglu M, Hassan S, Hassan S, Hederova S, Hernandez J, Hernandez LMC, Hessissen L, Hordofa DF, Huang LC, Hubbard GB, Hummlen M, Husakova K, Hussein Al-Janabi AN, Ida R, Ilic VR, Jairaj V, Jeeva I, Jenkinson H, Ji X, Jo DH, Johnson KP, Johnson WJ, Jones MM, Kabesha TBA, Kabore RL, Kaliki S, Kalinaki A, Kantar M, Kao LY, Kardava T, Kebudi R, Kepak T, Keren-Froim N, Khan ZJ, Khaqan HA, Khauv P, Kheir WJ, Khetan V, Khodabande A, Khotenashvili Z, Kim JW, Kim JH, Kiratli H, Kivelä TT, Klett A, Komba Palet JEK, Krivaitiene D, Kruger M, Kulvichit K, Kuntorini MW, Kyara A, Lachmann ES, Lam CPS, Lam GC, Larson SA, Latinovic S, Laurenti KD, Le BHA, Lecuona K, Leverant AA, Li C, Limbu B, Long QB, López JP, Lukamba RM, Lumbroso L, Luna-Fineman S, Lutfi D, Lysytsia L, Magrath GN, Mahajan A, Majeed AR, Maka E, Makan M, Makimbetov EK, 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Subjects
Child, Preschool, Female, Humans, Infant, Male, Retinoblastoma economics, Retinoblastoma epidemiology
Abstract

Importance: Early diagnosis of retinoblastoma, the most common intraocular cancer, can save both a child's life and vision. However, anecdotal evidence suggests that many children across the world are diagnosed late. To our knowledge, the clinical presentation of retinoblastoma has never been assessed on a global scale., Objectives: To report the retinoblastoma stage at diagnosis in patients across the world during a single year, to investigate associations between clinical variables and national income level, and to investigate risk factors for advanced disease at diagnosis., Design, Setting, and Participants: A total of 278 retinoblastoma treatment centers were recruited from June 2017 through December 2018 to participate in a cross-sectional analysis of treatment-naive patients with retinoblastoma who were diagnosed in 2017., Main Outcomes and Measures: Age at presentation, proportion of familial history of retinoblastoma, and tumor stage and metastasis., Results: The cohort included 4351 new patients from 153 countries; the median age at diagnosis was 30.5 (interquartile range, 18.3-45.9) months, and 1976 patients (45.4%) were female. Most patients (n = 3685 [84.7%]) were from low- and middle-income countries (LMICs). Globally, the most common indication for referral was leukocoria (n = 2638 [62.8%]), followed by strabismus (n = 429 [10.2%]) and proptosis (n = 309 [7.4%]). Patients from high-income countries (HICs) were diagnosed at a median age of 14.1 months, with 656 of 666 (98.5%) patients having intraocular retinoblastoma and 2 (0.3%) having metastasis. Patients from low-income countries were diagnosed at a median age of 30.5 months, with 256 of 521 (49.1%) having extraocular retinoblastoma and 94 of 498 (18.9%) having metastasis. Lower national income level was associated with older presentation age, higher proportion of locally advanced disease and distant metastasis, and smaller proportion of familial history of retinoblastoma. Advanced disease at diagnosis was more common in LMICs even after adjusting for age (odds ratio for low-income countries vs upper-middle-income countries and HICs, 17.92 [95% CI, 12.94-24.80], and for lower-middle-income countries vs upper-middle-income countries and HICs, 5.74 [95% CI, 4.30-7.68])., Conclusions and Relevance: This study is estimated to have included more than half of all new retinoblastoma cases worldwide in 2017. Children from LMICs, where the main global retinoblastoma burden lies, presented at an older age with more advanced disease and demonstrated a smaller proportion of familial history of retinoblastoma, likely because many do not reach a childbearing age. Given that retinoblastoma is curable, these data are concerning and mandate intervention at national and international levels. Further studies are needed to investigate factors, other than age at presentation, that may be associated with advanced disease in LMICs.

Published
2020
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