@article {1490445,
	title = {Global Retinoblastoma Presentation and Analysis by National Income Level},
	journal = {JAMA Oncol},
	year = {2020},
	month = {2020 Feb 27},
	abstract = {Importance: Early diagnosis of retinoblastoma, the most common intraocular cancer, can save both a child{\textquoteright}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.},
	issn = {2374-2445},
	doi = {10.1001/jamaoncol.2019.6716},
	author = {Global Retinoblastoma Study Group and Fabian, Ido Didi and Abdallah, Elhassan and Abdullahi, Shehu U and Abdulqader, Rula A and Adamou Boubacar, Sahadatou and Ademola-Popoola, Dupe S and Adio, Adedayo and Afshar, Armin R and Aggarwal, Priyanka and Aghaji, Ada E and Ahmad, Alia and Akib, Marliyanti N R and Al Harby, Lamis and Al Ani, Mouroge H and Alakbarova, Aygun and Portabella, Silvia Alarc{\'o}n and Al-Badri, Safaa A F and Alcasabas, Ana Patricia A and Al-Dahmash, Saad A and Alejos, Amanda and Alemany-Rubio, Ernesto and Alfa Bio, Amadou I and Alfonso Carreras, Yvania and Al-Haddad, Christiane and Al-Hussaini, Hamoud H Y and Ali, Amany M and Alia, Donjeta B and Al-Jadiry, Mazin F and Al-Jumaly, Usama and Alkatan, Hind M and All-Eriksson, Charlotta and Al-Mafrachi, Ali A R M and Almeida, Argentino A and Alsawidi, Khalifa M and Al-Shaheen, Athar A S M and Al-Shammary, Entissar H and Amiruddin, Primawita O and Antonino, Romanzo and Astbury, Nicholas J and Atalay, Hatice T and Atchaneeyasakul, La-Ongsri and Atsiaya, Rose and Attaseth, Taweevat and Aung, Than H and Ayala, Silvia and Baizakova, Baglan and Balaguer, Julia and Balayeva, Ruhengiz and Balwierz, Walentyna and Barranco, Honorio and Bascaran, Covadonga and Beck Popovic, Maja and Benavides, Raquel and Benmiloud, Sarra and Bennani Guebessi, Nissrine and Berete, Rokia C and Berry, Jesse L and Bhaduri, Anirban and Bhat, Sunil and Biddulph, Shelley J and Biewald, Eva M and Bobrova, Nadia and Boehme, Marianna and Boldt, H C and Bonanomi, Maria Teresa B C and Bornfeld, Norbert and Bouda, Gabrielle C and Bouguila, H{\'e}di and Boumedane, Amaria and Brennan, Rachel C and Brichard, B{\'e}n{\'e}dicte G and Buaboonnam, Jassada and Calder{\'o}n-Sotelo, Patricia and Calle Jara, Doris A and Camuglia, Jayne E and Cano, Miriam R and Capra, Michael and Cassoux, Nathalie and Castela, Guilherme and Castillo, Luis and Catal{\`a}-Mora, Jaume and Chantada, Guillermo L and Chaudhry, Shabana and Chaugule, Sonal S and Chauhan, Argudit and Chawla, Bhavna and Chernodrinska, Violeta S and Chiwanga, Faraja S and Chuluunbat, Tsengelmaa and Cieslik, Krzysztof and Cockcroft, Ruellyn L and Comsa, Codruta and Correa, Zelia M and Correa Llano, Maria G and Corson, Timothy W and Cowan-Lyn, Kristin E and Cs{\'o}ka, Monika and Cui, Xuehao and Da Gama, Isac V and Dangboon, Wantanee and Das, Anirban and Das, Sima and Davanzo, Jacquelyn M and Davidson, Alan and De Potter, Patrick and Delgado, Karina Q and Demirci, Hakan and Desjardins, Laurence and Diaz Coronado, Rosdali Y and Dimaras, Helen and Dodgshun, Andrew J and Donaldson, Craig and Donato Macedo, Carla R and Dragomir, Monica D and Du, Yi and Du Bruyn, Magritha and Edison, Kemala S and Eka Sutyawan, I Wayan and El Kettani, Asmaa and Elbahi, Amal M and Elder, James E and Elgalaly, Dina and Elhaddad, Alaa M and Elhassan, Moawia M Ali and Elzembely, Mahmoud M and Essuman, Vera A and Evina, Ted Grimbert A and Fadoo, Zehra and Fandi{\~n}o, Adriana C and Faranoush, Mohammad and Fasina, Oluyemi and Fern{\'a}ndez, Delia D P G and Fern{\'a}ndez-Teijeiro, Ana and Foster, Allen and Frenkel, Shahar and Fu, Ligia D and Fuentes-Alabi, Soad L and Gallie, Brenda L and Gandiwa, Moira and Garcia, Juan L and Garc{\'\i}a Aldana, David and Gassant, Pascale Y and Geel, Jennifer A and Ghassemi, Fariba and Gir{\'o}n, Ana V and Gizachew, Zelalem and Goenz, Marco A and Gold, Aaron S and Goldberg-Lavid, Maya and Gole, Glen A and Gomel, Nir and Gonzalez, Efren and Gonzalez Perez, Graciela and Gonz{\'a}lez-Rodr{\'\i}guez, Liudmira and Garcia Pacheco, Henry N and Graells, Jaime and Green, Liz and Gregersen, Pernille A and Grigorovski, Nathalia D A K and Guedenon, Koffi M and Gunasekera, D Sanjeeva and G{\"u}nd{\"u}z, Ahmet K and Gupta, Himika and Gupta, Sanjiv and Hadjistilianou, Theodora and Hamel, Patrick and Hamid, Syed A and Hamzah, Norhafizah and Hansen, Eric D and Harbour, J William and Hartnett, M Elizabeth and Hasanreisoglu, Murat and Hassan, Sadiq and Hassan, Shadab and Hederova, Stanislava and Hernandez, Jose and Hernandez, Lorelay Marie Carcamo and Hessissen, Laila and Hordofa, Diriba F and Huang, Laura C and Hubbard, G B and Hummlen, Marlies and Husakova, Kristina and Hussein Al-Janabi, Allawi N and Ida, Russo and Ilic, Vesna R and Jairaj, Vivekaraj and Jeeva, Irfan and Jenkinson, Helen and Ji, Xunda and Jo, Dong Hyun and Johnson, Kenneth P and Johnson, William J and Jones, Michael M and Kabesha, Theophile B Amani and Kabore, Rolande L and Kaliki, Swathi and Kalinaki, Abubakar and Kantar, Mehmet and Kao, Ling-Yuh and Kardava, Tamar and Kebudi, Rejin and Kepak, Tomas and Keren-Froim, Naama and Khan, Zohora J and Khaqan, Hussain A and Khauv, Phara and Kheir, Wajiha J and Khetan, Vikas and Khodabande, Alireza and Khotenashvili, Zaza and Kim, Jonathan W and Kim, Jeong Hun and Kiratli, Hayyam and Kivel{\"a}, Tero T and Klett, Artur and Komba Palet, Jess Elio Kosh and Krivaitiene, Dalia and Kruger, Mariana and Kulvichit, Kittisak and Kuntorini, Mayasari W and Kyara, Alice and Lachmann, Eva S and Lam, Carol P S and Lam, Geoffrey C and Larson, Scott A and Latinovic, Slobodanka and Laurenti, Kelly D and Le, Bao Han A and Lecuona, Karin and Leverant, Amy A and Li, Cairui and Limbu, Ben and Long, Quah Boon and L{\'o}pez, Juan P and Lukamba, Robert M and Lumbroso, Livia and Luna-Fineman, Sandra and Lutfi, Delfitri and Lysytsia, Lesia and Magrath, George N and Mahajan, Amita and Majeed, Abdul Rahim and Maka, Erika and Makan, Mayuri and Makimbetov, Emil K and Manda, Chatonda and Mart{\'\i}n Begue, Nieves and Mason, Lauren and Mason, John O and Matende, Ibrahim O and Materin, Miguel and Mattosinho, Clarissa C D S and Matua, Marchelo and Mayet, Ismail and Mbumba, Freddy B and McKenzie, John D and Medina-Sanson, Aurora and Mehrvar, Azim and Mengesha, Aemero A and Menon, Vikas and Mercado, Gary John V D and Mets, Marilyn B and Midena, Edoardo and Mishra, Divyansh K C and Mndeme, Furahini G and Mohamedani, Ahmed A and Mohammad, Mona T and Moll, Annette C and Montero, Margarita M and Morales, Rosa A and Moreira, Claude and Mruthyunjaya, Prithvi and Msina, Mchikirwa S and Msukwa, Gerald and Mudaliar, Sangeeta S and Muma, Kangwa I and Munier, Francis L and Murgoi, Gabriela and Murray, Timothy G and Musa, Kareem O and Mushtaq, Asma and Mustak, Hamzah and Muyen, Okwen M and Naidu, Gita and Nair, Akshay Gopinathan and Naumenko, Larisa and Ndoye Roth, Paule A{\"\i}da and Nency, Yetty M and Neroev, Vladimir and Ngo, Hang and Nieves, Rosa M and Nikitovic, Marina and Nkanga, Elizabeth D and Nkumbe, Henry and Nuruddin, Murtuza and Nyaywa, Mutale and Obono-Obiang, Ghislaine and Oguego, Ngozi C and Olechowski, Andrzej and Oliver, Scott C N and Osei-Bonsu, Peter and Ossandon, Diego and Paez-Escamilla, Manuel A and Pagarra, Halimah and Painter, Sally L and Paintsil, Vivian and Paiva, Luisa and Pal, Bikramjit P and Palanivelu, Mahesh Shanmugam and Papyan, Ruzanna and Parrozzani, Raffaele and Parulekar, Manoj and Pascual Morales, Claudia R and Paton, Katherine E and Pawinska-Wasikowska, Katarzyna and Pe{\textquoteright}er, Jacob and Pe{\~n}a, Armando and Peric, Sanja and Pham, Chau T M and Philbert, Remezo and Plager, David A and Pochop, Pavel and Polania, Rodrigo A and Polyakov, Vladimir G and Pompe, Manca T and Pons, Jonathan J and Prat, Daphna and Prom, Vireak and Purwanto, Ignatius and Qadir, Ali O and Qayyum, Seema and Qian, Jiang and Rahman, Ardizal and Rahman, Salman and Rahmat, Jamalia and Rajkarnikar, Purnima and Ramanjulu, Rajesh and Ramasubramanian, Aparna and Ramirez-Ortiz, Marco A and Raobela, L{\'e}a and Rashid, Riffat and Reddy, M Ashwin and Reich, Ehud and Renner, Lorna A and Reynders, David and Ribadu, Dahiru and Riheia, Mussagy M and Ritter-Sovinz, Petra and Rojanaporn, Duangnate and Romero, Livia and Roy, Soma R and Saab, Raya H and Saakyan, Svetlana and Sabhan, Ahmed H and Sagoo, Mandeep S and Said, Azza M A and Saiju, Rohit and Salas, Beatriz and San Rom{\'a}n Pacheco, Sonsoles and S{\'a}nchez, Gissela L and Sayalith, Phayvanh and Scanlan, Trish A and Schefler, Amy C and Schoeman, Judy and Sedaghat, Ahad and Seregard, Stefan and Seth, Rachna and Shah, Ankoor S and Shakoor, Shawkat A and Sharma, Manoj K and Sherief, Sadik T and Shetye, Nandan G and Shields, Carol L and Siddiqui, Sorath Noorani and Sidi Cheikh, Sidi and Silva, S{\'o}nia and Singh, Arun D and Singh, Niharika and Singh, Usha and Singha, Penny and Sitorus, Rita S and Skalet, Alison H and Soebagjo, Hendrian D and Sorochynska, Tetyana and Ssali, Grace and Stacey, Andrew W and Staffieri, Sandra E and Stahl, Erin D and Stathopoulos, Christina and Stirn Kranjc, Branka and Stones, David K and Strahlendorf, Caron and Suarez, Maria Estela Coleoni and Sultana, Sadia and Sun, Xiantao and Sundy, Meryl and Superstein, Rosanne and Supriyadi, Eddy and Surukrattanaskul, Supawan and Suzuki, Shigenobu and Svojgr, Karel and Sylla, Fatoumata and Tamamyan, Gevorg and Tan, Deborah and Tandili, Alketa and Tarrillo Leiva, Fanny F and Tashvighi, Maryam and Tateshi, Bekim and Tehuteru, Edi S and Teixeira, Luiz F and Teh, Kok Hoi and Theophile, Tuyisabe and Toledano, Helen and Trang, Doan L and Traor{\'e}, Fousseyni and Trichaiyaporn, Sumalin and Tuncer, Samuray and Tyau-Tyau, Harba and Umar, Ali B and Unal, Emel and Uner, Ogul E and Urbak, Steen F and Ushakova, Tatiana L and Usmanov, Rustam H and Valeina, Sandra and van Hoefen Wijsard, Milo and Varadisai, Adisai and Vasquez, Liliana and Vaughan, Leon O and Veleva-Krasteva, Nevyana V and Verma, Nishant and Victor, Andi A and Viksnins, Maris and Villac{\'\i}s Chafla, Edwin G and Vishnevskia-Dai, Vicktoria and Vora, Tushar and Wachtel, Antonio E and Wackernagel, Werner and Waddell, Keith and Wade, Patricia D and Wali, Amina H and Wang, Yi-Zhuo and Weiss, Avery and Wilson, Matthew W and Wime, Amelia D C and Wiwatwongwana, Atchareeya and Wiwatwongwana, Damrong and Wolley Dod, Charlotte and Wongwai, Phanthipha and Xiang, Daoman and Xiao, Yishuang and Yam, Jason C and Yang, Huasheng and Yanga, Jenny M and Yaqub, Muhammad A and Yarovaya, Vera A and Yarovoy, Andrey A and Ye, Huijing and Yousef, Yacoub A and Yuliawati, Putu and Zapata L{\'o}pez, Arturo M and Zein, Ekhtelbenina and Zhang, Chengyue and Zhang, Yi and Zhao, Junyang and Zheng, Xiaoyu and Zhilyaeva, Katsiaryna and Zia, Nida and Ziko, Othman A O and Zondervan, Marcia and Bowman, Richard}
}
