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

Author

Fabian, Ido Didi, Abdallah, Elhassan, Abdullahi, Shehu U, Abdulqader, Rula A, Abdulrahaman, Aminatu A, Abouelnaga, Sherif, Ademola-Popoola, Dupe S, Adio, Adedayo, Afifi, Mahmoud A, Afshar, Armin R, Aggarwal, Priyanka, Aghaji, Ada E, Ahmad, Alia, Akib, Marliyanti NR, Akinsete, Adeseye, Al Harby, Lamis, Al Mesfer, Saleh, Al Ani, Mouroge H, Alarcón Portabella, Silvia, Al-Badri, Safaa AF, Alcasabas, Ana Patricia A, Al-Dahmash, Saad A, Alejos, Amanda, Alemany-Rubio, Ernesto, Alfa Bio, Amadou I, Alfonso Carreras, Yvania, Al-Haddad, Christiane E, Al-Hussaini, Hamoud HY, Ali, Amany M, Alia, Donjeta B, Al-Jadiry, Mazin F, Al-Jumaily, Usama, Alkatan, Hind M, All-Eriksson, Charlotta, Al-Mafrachi, Ali ARM, Almeida, Argentino A, Alsawidi, Khalifa M, Al-Shaheen, Athar ASM, Al-Shammary, Entissar H, Amankwaa-Frempong, Doreen, Amiruddin, Primawita O, Armytasari, Inggar, Astbury, Nicholas J, Atalay, Hatice T, Ataseven, Eda, Atchaneeyasakul, La-ongsri, Atsiaya, Rose, Autrata, Rudolf, Balaguer, Julia, Balayeva, Ruhengiz, Barranco, Honorio, Bartoszek, Paulina, Bartuma, Katarina, Bascaran, Covadonga, Bechrakis, Nikolaos E, Beck Popovic, Maja, Begimkulova, Ainura S, Benmiloud, Sarra, Berete, Rokia C, Berry, Jesse L, Bhaduri, Anirban, Bhat, Sunil, Bhattacharyya, Arpita, Biewald, Eva M, Binkley, Elaine, Blum, Sharon, Bobrova, Nadia, Boldt, H.C., Bonanomi, Maria Teresa BC, Bouda, Gabrielle C, Bouguila, Hédi, Brennan, Rachel C, Brichard, Bénédicte G, Buaboonnam, Jassada, Budiongo, Aléine, Burton, Matthew J, Calderón-Sotelo, Patricia, Calle Jara, Doris A, Camuglia, Jayne E, Cano, Miriam R, Capra, Michael, Caspi, Shani, Cassoux, Nathalie, Castela, Guilherme, Castillo, Luis, Català-Mora, Jaume, Cavieres, Isabel, Chandramohan, Arthika, Chantada, Guillermo L, Chaudhry, Shabana, Chawla, Bhavna, Chen, Wensi, Chiwanga, Faraja S, Chuluunbat, Tsengelmaa, Cieslik, Krzysztof, Clark, Antony, Cockcroft, Ruellyn L, Comsa, Codruta, Correa Llano, Maria G, Corson, Timothy W, Couitchere, Line, Cowan-Lyn, Kristin E, Csóka, Monika, Dangboon, Wantanee, Das, Anirban, Das, Pranab, Das, Sima, Davanzo, Jacquelyn M, Davidson, Alan, De Francesco, Sonia, De Potter, Patrick, Quintero D, Karina, Demirci, Hakan, Desjardins, Laurence, Díaz Coronado, Rosdali Y, Dimaras, Helen, Dodgshun, Andrew J, Donato Macedo, Carla R, Dragomir, Monica D, Du, Yi, Du Bruyn, Magritha, Du Plessis, Johannes, Dudeja, Gagan, Eerme, Katrin, Eka Sutyawan, I Wayan, El Kettani, Asmaa, Elbahi, Amal M, Elder, James E, Elhaddad, Alaa M, Elhassan, Moawia MA, Elzembely, Mahmoud M, Ericksen, Connor, Essuman, Vera A, Evina, Ted Grimbert A, Ezegwui, Ifeoma R, Fadoo, Zehra, Fandiño, Adriana C, Faranoush, Mohammad, Fasina, Oluyemi, Fernández, Delia DPG, Fernández-Teijeiro, Ana, Foster, Allen, Frenkel, Shahar, Fu, Ligia D, Fuentes-Alabi, Soad L, Garcia, Juan L, García Aldana, David, Garcia Pacheco, Henry N, Geel, Jennifer A, Ghassemi, Fariba, Girón, Ana V, Goenz, Marco A, Gold, Aaron S, Goldberg, Hila, Gole, Glen A, Gomel, Nir, Gonzalez, Efren, Gonzalez Perez, Graciela, González-Rodríguez, Liudmira, Gorfine, Malka, Graells, Jaime, Gregersen, Pernille A, Grigorovski, Nathalia DAK, Guedenon, Koffi M, Gunasekera, D Sanjeeva, Gündüz, Ahmet K, Gupta, Himika, Gupta, Sanjiv, Gupta, Vineeta, Hadjistilianou, Theodora, Hamel, Patrick, Hamid, Syed A, Hamzah, Norhafizah, Hansen, Eric D, Harbour, J William, Hartnett, M. Elizabeth, Hasanreisoglu, Murat, Muhammad, Hassan, Hassan, Sadiq, Hassan, Shadab, Hautz, Wojciech, Haydar, Huda, Hederova, Stanislava, Hessissen, Laila, Hongeng, Suradej, Hordofa, Diriba F, Hubbard, G. Baker, Hummelen, Marlies, Husakova, Kristina, Hussein Al-Janabi, Allawi N, Ibanga, Affiong, Ida, Russo, Ilic, Vesna R, Islamov, Ziyavuddin, Jairaj, Vivekaraj, Janjua, Teyyeb, Jeeva, Irfan, Ji, Xunda, Jo, Dong Hyun, Jones, Michael M, Kabesha Amani, Theophile B, Kabore, Rolande L, Kaliki, Swathi, Kalinaki, Abubakar, Kamsang, Pius, Kantar, Mehmet, Kapelushnik, Noa, Kardava, Tamar, Kebudi, Rejin, Keomisy, Jonny, Kepak, Tomas, Ketteler, Petra, Khan, Zohora J, Khaqan, Hussain A, Khetan, Vikas, Khodabande, Alireza, Khotenashvili, Zaza, Kim, Jonathan W, Kim, Jeong Hun, Kiratli, Hayyam, Kivela, Tero T., Klett, Artur, Koç, Irem, Kosh Komba Palet, Jess Elio, Krivaitiene, Dalia, Kruger, Mariana, Kulvichit, Kittisak, Kuntorini, Mayasari W, Kyara, Alice, Lam, Geoffrey C, Larson, Scott A, Latinović, Slobodanka, Laurenti, Kelly D, Lavy, Yotam, Lavric Groznik, Alenka, Leverant, Amy A, Li, Cairui, Li, Kaijun, Limbu, Ben, Liu, Chun-Hsiu, Quah, BoonLong, López, Juan P, Lukamba, Robert M, Luna-Fineman, Sandra, Lutfi, Delfitri, Lysytsia, Lesia, Madgar, Shiran, Magrath, George N, Mahajan, Amita, Maitra, Puja, Maka, Erika, Makimbetov, Emil K, Maktabi, Azza, Maldonado, Carlos, Mallipatna, Ashwin, Manudhane, Rebecca, Manzhuova, Lyazat, Martín-Begue, Nieves, Masud, Sidra, Matende, Ibrahim O, Mattosinho, Clarissa CDS, Matua, Marchelo, Mayet, Ismail, Mbumba, Freddy B, McKenzie, John D, Mehrvar, Azim, Mengesha, Aemero A, Menon, Vikas, Mercado, Gary John V, Mets, Marilyn B, Midena, Edoardo, Miller, Audra, Mishra, Divyansh KC, Mndeme, Furahini G, Mohamedani, Ahmed A, Mohammad, Mona T, Moll, Annette C, Montero, Margarita M, Moreira, Claude, Mruthyunjaya, Prithvi, Msina, Mchikirwa S, Msukwa, Gerald, Mudaliar, Sangeeta S, Muma, Kangwa I M, Munier, Francis L, Murray, Timothy G, Musa, Kareem O, Mushtaq, Asma, Musika, Anne A, Mustak, Hamzah, Mustapha, Tajudeen, Muyen, Okwen M, Myezo, Khumo H, Naidu, Gita, Naidu, Natasha, Nair, Akshay Gopinathan, Natarajan, Sundaram, Naumenko, Larisa, Ndoye Roth, Paule Aïda, Nency, Yetty M, Neroev, Vladimir, Ng, Yvonne, Nikitovic, Marina, Nkanga, Elizabeth D, Nkumbe, Henry E, Numbi, Marcel N, Nummi, Kalle, Nuruddin, Murtuza, Nyaywa, Mutale, Nyirenda, Chinsisi, Obono-Obiang, Ghislaine, Oliver, Scott CN, Oporto, Joaquin, Ortega-Hernández, Miriam, Oscar, Alexander H, Ossandon, Diego, Pagarra, Halimah, Paintsil, Vivian, Paiva, Luisa, Palanivelu, Mahesh Shanmugam, Papyan, Ruzanna, Parrozzani, Raffaele, Pascual Morales, Claudia R, Paton, Katherine E, Pe'er, Jacob, Peralta Calvo, Jesús, Perić, Sanja, Pham, Chau TM, Philbert, Remezo, Plager, David A, Pochop, Pavel, Polania, Rodrigo A., Polyakov, Vladimir, Ponce, Jimena, Qadir, Ali O, Qayyum, Seema, Qian, Jiang, Refaeli, David, Rahman, Ardizal, Rajkarnikar, Purnima, Ramanjulu, Rajesh, Ramasubramanian, Aparna, Ramirez-Ortiz, Marco A, Randhawa, Jasmeen K, Randrianarisoa, Hoby Lalaina, Raobela, Léa, Rashid, Riffat, Reddy, M.A., Renner, Lorna A, Reynders, David, Ribadu, Dahiru, Ritter-Sovinz, Petra, Rogowska, Anna, Rojanaporn, Duangnate, Romero, Livia, Roy, Soma R, Saab, Raya H, Saakyan, Svetlana, Sabhan, Ahmed H, Sagoo, Mandeep S, Said, Azza MA, Saiju, Rohit, Salas, Beatriz, San Román Pacheco, Sonsoles, Sánchez, Gissela L, Sanchez Orozco, Alma Janeth, Sayalith, Phayvanh, Scanlan, Trish A, Schlüter, Sabrina, Schwab, Christoph, Sedaghat, Ahad, Seth, Rachna, Sgroi, Mariana, Shah, Ankoor S, Shakoor, Shawkat A, Sharma, Manoj K, Sherief, Sadik T, Shields, Carol L, Sia, David, Siddiqui, Sorath Noorani, Sidi cheikh, Sidi, Silva, Sónia, Singh, Arun D, Singh, Usha, Singha, Penny, Sitorus, Rita S, Skalet, Alison H, Soebagjo, Hendrian D, Sorochynska, Tetyana, Ssali, Grace, Stacey, Andrew W, Staffieri, Sandra E, Stahl, Erin D, Steinberg, David M, Stones, David K, Strahlendorf, Caron, Suarez, Maria Estela Coleoni, Sultana, Sadia, Sun, Xiantao, Superstein, Rosanne, Supriyadi, Eddy, Surukrattanaskul, Supawan, Suzuki, Shigenobu, Svojgr, Karel, Sylla, Fatoumata, Tamamyan, Gevorg, Tan, Deborah, Tandili, Alketa, Tang, Jing, Tarrillo Leiva, Fanny F, Tashvighi, Maryam, Tateshi, Bekim, Teh, Kok Hoi, Tehuteru, Edi S, Teixeira, Luiz F, Tekavcic Pompe, Manca, Thawaba, Abdullah Dahan M, Theophile, Tuyisabe, Toledano, Helen, Trang, Doan L, Traoré, Fousseyni, Tripathy, Devjyoti, Tuncer, Samuray, Tyau-Tyau, Harba, Umar, Ali B, Unal, Emel, Uner, Ogul E, Urbak, Steen F, Ushakova, Tatiana L, Usmanov, Rustam H, Valeina, Sandra, Valente, Paola, van Hoefen Wijsard, Milo, Vasquez Anchaya, Jacqueline Karina, Vaughan, Leon O, Veleva-Krasteva, Nevyana V, Verma, Nishant, Victor, Andi A, Viksnins, Maris, Villacís Chafla, Edwin G, Villegas, Victor M, Vishnevskia-Dai, Victoria, Waddell, Keith, Wali, Amina H, Wang, Yi-Zhuo, Wangtiraumnuay, Nutsuchar, Wetter, Julie, Widiarti, Widiarti, Wilson, Matthew W, Wime, Amelia DC, Wiwatwongwana, Atchareeya, Wiwatwongwana, Damrong, Wolley Dod, Charlotte, Wong, Emily S, Wongwai, Phanthipha, Wu, Si-qi, Xiang, Daoman, Xiao, Yishuang, Xu, Bing, Xue, Kang, Yaghy, Antonio, Yam, Jason C, Yang, Huasheng, Yanga, Jenny M, Yaqub, Muhammad A, Yarovaya, Vera A, Yarovoy, Andrey A, Ye, Huijing, Yee, Roberto I, Yousef, Yacoub A, Yuliawati, Putu, Zapata López, Arturo M, Zein, Ekhtelbenina, Zhang, Yi, Zhilyaeva, Katsiaryna, Zia, Nida, Ziko, Othman AO, Zondervan, Marcia, and Bowman, Richard

Published
2022
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2. Pseudoxanthoma Elasticum: A Case Report

Author

Migena Vargu, Petrit Vargu, Sabina Dedej, Eriselda Kurushi, Alketa Tandili, Stela Ceca, Majlinda Çafka, Ilirjana Zekja, and Ermira Vasili

Subjects
General Medicine
Abstract

BACKGROUND: Pseudoxanthoma elasticum (PXE) is a rare, genetic, metabolic disease with autosomal recessive inheritance caused by mutations in the ABCC6 gene. The lack of functional ABCC6 protein leads to ectopic mineralization that is most apparent in the elastic tissues of the skin, eyes, and blood vessels. Dermatologic manifestations consist of small yellow papules on the nape and sides of the neck and in flexural areas that coalesce into reticulated plaques resembling the cobblestone aspect, and then the skin becomes loose and wrinkled. Histopathologic findings provide characteristic clues such as short, fragmented, clumped, and calcified mid-dermal elastic fibers. CASE PRESENTATION: A 27-year-old Albanian female was referred to the dermatology clinic with skin complaints for approximately 17 years. On physical examination, we observed “cobblestone pattern” lesion located in the anterior, lateral, and posterior aspects of the neck, bilateral axillary, inguinal, antecubital, and popliteal regions, and periumbilical area. A biopsy was performed and the histopathology confirmed the typical changes in the dermis because of ectopic mineralization. The funduscopy revealed the “peau d’orange” aspect, bilateral angioid streaks but no neovascularization. Carotid echography showed minimal intimate thickening with flow acceleration but without significant stenosis of the right common carotid artery (ACC). Different laboratory exams were conducted that resulted within the normal range. CONCLUSION: There is no specific treatment, and therapeutical management is based on prevention, tracking, and follow-ups to increase surveillance of clinical complications through a multidisciplinary team. The dermatologist is usually the first who faces Pseudoxanthoma elasticum manifestations. Therefore, the dermatologist should provide the patient with the best therapeutical and preventive approaches.

Published
2023

3. Albania

Author

Xhaho, Armela, primary and Tandili, Alma Lleshi, additional

Published
2019
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5. Pseudoxanthoma Elasticum: A Case Report

Author

Vargu, Migena, primary, Vargu, Petrit, additional, Dedej, Sabina, additional, Kurushi, Eriselda, additional, Tandili, Alketa, additional, Ceca, Stela, additional, Çafka, Majlinda, additional, Zekja, Ilirjana, additional, and Vasili, Ermira, additional

Published
2023
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6. 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

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

Author

Alia, Donjeta B., Tandili, Alketa, Paiva, Luisa, Wime, Amelia Dc, Chantada, Guillermo L., Fandino, Adriana C., and Sgroi, Mariana

Subjects
Intravenous Chemotherapy, Cancer
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. Enudeation 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% (524-63-0) 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 cT1 (8.98; 4.44-18.18), and older age at diagnosis in children up to 3 years (1.38 per year; 1.23-1.56). For children aged 3-7 years, the mortality risk decreased slightly (p=0.0104 for the change in slope). Interpretation This study, estimated to include approximately half of all new retinoblastoma cases worldwide in 2017, shows profound inequity in survival of children depending on the national income level of their country of residence. In high-income countries, death from retinoblastoma is rare, whereas in low-income countries estimated 3-year survival is just over 50%. Although essential treatments are available in nearly all countries, early diagnosis and treatment in low-income countries are key to improving survival outcomes. Copyright (C) 2022 The Author(s). Published by Elsevier Ltd., Queen Elizabeth Diamond Jubilee Trust, Queen Elizabeth Diamond Jubilee Trust.

Published
2022

11. Incidence of Retinoblastoma Has Increased: Results from 40 European Countries

Author

Stacey, Andrew W., primary, Bowman, Richard, additional, Foster, Allen, additional, Kivelä, Tero T., additional, Munier, Francis L., additional, Cassoux, Nathalie, additional, Fabian, Ido Didi, additional, Harby, Lamis Al, additional, Portabella, Silvia Alarcón, additional, Alia, Donjeta B., additional, All-Eriksson, Charlotta, additional, Antonino, Romanzo, additional, Astbury, Nicholas J., additional, Balaguer, Julia, additional, Balwierz, Walentyna, additional, Barranco, Honorio, additional, Bascaran, Covadonga, additional, Popovic, Maja Beck, additional, Biewald, Eva M., additional, Bobrova, Nadia, additional, Bornfeld, Norbert, additional, Brichard, Bénédicte G., additional, Blum, Sharon, additional, Capra, Michael, additional, Castela, Guilherme, additional, Català-Mora, Jaume, additional, Chantada, Guillermo L., additional, Chernodrinska, Violeta S., additional, Cieslik, Krzysztof, additional, Comsa, Codruta, additional, Correa Llano, Maria G., additional, Csóka, Monika, additional, De Potter, Patrick, additional, Desjardins, Laurence, additional, Dragomir, Monica D., additional, Fernández-Teijeiro, Ana, additional, Aldana, David García, additional, Gregersen, Pernille A., additional, Gomel, Nir, additional, Hadjistilianou, Theodora, additional, Hederova, Stanislava, additional, Hummlen, Marlies, additional, Husakova, Kristina, additional, Ida, Russo, additional, Ilic, Vesna R., additional, Jenkinson, Helen, additional, Kapelushnik, Noa, additional, Kardava, Tamar, additional, Keren-Froim, Naama, additional, Kepak, Tomas, additional, Khotenashvili, Zaza, additional, Klett, Artur, additional, Krivaitiene, Dalia, additional, Latinović, Slobodanka, additional, Lumbroso, Livia, additional, Lysytsia, Lesia, additional, Maka, Erika, additional, Begue, Nieves Martín, additional, Midena, Edoardo, additional, Moll, Annette C., additional, Murgoi, Gabriela, additional, Naumenko, Larisa, additional, Neroev, Vladimir, additional, Nikitovic, Marina, additional, Olechowski, Andrzej, additional, Papyan, Ruzanna, additional, Parrozzani, Raffaele, additional, Parulekar, Manoj V., additional, Pawinska-Wasikowska, Katarzyna, additional, Perić, Sanja, additional, Pochop, Pavel, additional, Polyakov, Vladimir G., additional, Reddy, M. Ashwin, additional, Ritter-Sovinz, Petra, additional, Saakyan, Svetlana, additional, Sagoo, Mandeep S., additional, San Román Pacheco, Sonsoles, additional, Seregard, Stefan, additional, Silva, Sónia, additional, Sorochynska, Tetyana, additional, Stathopoulos, Christina, additional, Kranjc, Branka Stirn, additional, Svojgr, Karel, additional, Tamamyan, Gevorg, additional, Tandili, Alketa, additional, Tateshi, Bekim, additional, Pompe, Manca Tekavcic, additional, Urbak, Steen F., additional, Ushakova, Tatiana L., additional, Valeina, Sandra, additional, van Hoefen Wijsard, Milo, additional, Veleva-Krasteva, Nevyana V., additional, Viksnins, Maris, additional, Wackernagel, Werner, additional, Dod, Charlotte Wolley, additional, Yarovaya, Vera A., additional, Yarovoy, Andrey A., additional, Zhilyaeva, Katsiaryna, additional, and Zondervan, Marcia, additional

Published
2021
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12. Incidence of Retinoblastoma Has Increased: Results from 40 European Countries

Author

Andrew W. Stacey, Richard Bowman, Allen Foster, Tero T. Kivelä, Francis L. Munier, Nathalie Cassoux, Ido Didi Fabian, Lamis Al Harby, Silvia Alarcón Portabella, Donjeta B. Alia, Charlotta All-Eriksson, Romanzo Antonino, Nicholas J. Astbury, Julia Balaguer, Walentyna Balwierz, Honorio Barranco, Covadonga Bascaran, Maja Beck Popovic, Eva M. Biewald, Nadia Bobrova, Norbert Bornfeld, Bénédicte G. Brichard, Sharon Blum, Michael Capra, Guilherme Castela, Jaume Català-Mora, Guillermo L. Chantada, Violeta S. Chernodrinska, Krzysztof Cieslik, Codruta Comsa, Maria G. Correa Llano, Monika Csóka, Patrick De Potter, Laurence Desjardins, Monica D. Dragomir, Ana Fernández-Teijeiro, David García Aldana, Pernille A. Gregersen, Nir Gomel, Theodora Hadjistilianou, Stanislava Hederova, Marlies Hummlen, Kristina Husakova, Russo Ida, Vesna R. Ilic, Helen Jenkinson, Noa Kapelushnik, Tamar Kardava, Naama Keren-Froim, Tomas Kepak, Zaza Khotenashvili, Artur Klett, Dalia Krivaitiene, Slobodanka Latinović, Livia Lumbroso, Lesia Lysytsia, Erika Maka, Nieves Martín Begue, Edoardo Midena, Annette C. Moll, Gabriela Murgoi, Larisa Naumenko, Vladimir Neroev, Marina Nikitovic, Andrzej Olechowski, Ruzanna Papyan, Raffaele Parrozzani, Manoj V. Parulekar, Katarzyna Pawinska-Wasikowska, Sanja Perić, Pavel Pochop, Vladimir G. Polyakov, M. Ashwin Reddy, Petra Ritter-Sovinz, Svetlana Saakyan, Mandeep S. Sagoo, Sonsoles San Román Pacheco, Stefan Seregard, Sónia Silva, Tetyana Sorochynska, Christina Stathopoulos, Branka Stirn Kranjc, Karel Svojgr, Gevorg Tamamyan, Alketa Tandili, Bekim Tateshi, Manca Tekavcic Pompe, Steen F. Urbak, Tatiana L. Ushakova, Sandra Valeina, Milo van Hoefen Wijsard, Nevyana V. Veleva-Krasteva, Maris Viksnins, Werner Wackernagel, Charlotte Wolley Dod, Vera A. Yarovaya, Andrey A. Yarovoy, Katsiaryna Zhilyaeva, Marcia Zondervan, Ophthalmology, ACS - Diabetes & metabolism, APH - Health Behaviors & Chronic Diseases, APH - Quality of Care, CCA - Cancer Treatment and quality of life, CCA - Imaging and biomarkers, and Amsterdam Reproduction & Development (AR&D)

Subjects
Male, Pediatrics, medicine.medical_specialty, Adolescent, Retinal Neoplasms, MEDLINE, 03 medical and health sciences, 0302 clinical medicine, Familial, Genetic, Fitness, Medicine, Humans, Child, business.industry, Retinoblastoma, Incidence (epidemiology), Incidence, Infant, Newborn, Infant, medicine.disease, Europe, Ophthalmology, Cross-Sectional Studies, 030220 oncology & carcinogenesis, Child, Preschool, 030221 ophthalmology & optometry, Female, business
Published
2021

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

Author

Tero Kivelä, Marina Nikitovic, Dalia Krivaitiene, Tamar Kardava, Stefan Seregard, Kristína Husáková, Fousseyni Traore, Claude Moreira, Vera Yarovaya, Donjeta B. Alia, Chatonda Manda, Mariana Kruger, Ghislaine Obono-Obiang, Argentino A. Almeida, Nevyana V. Veleva-Krasteva, Petra Ritter-Sovinz, Bekim Tateshi, Dupe S Ademola-Popoola, Sanja Perić, Oluyemi Fasina, Jennifer Geel, Steen F Urbak, Grace Ssali, Katsiaryna Zhilyaeva, Nieves Martín Begue, Aemero A. Mengesha, Gerald Msukwa, Larisa Naumenko, Monica D. Dragomir, Gabrielle C. Bouda, P. Kemilev, Henry Nkumbe, Amany M. Ali, Slobodanka Latinović, Amaria Boumedane, Ido Didi Fabian, Jaume Català-Mora, Walentyna Balwierz, Theodora Hadjistilianou, Marlies Hummlen, Laila Hessissen, Shelley J. Biddulph, Vesna R. Ilic, Okwen M. Muyen, Michael Capra l, Edoardo Midena, Shehu U. Abdullahi, Ruzanna Papyan, Allen Foster, Annette C. Moll, Laurence Desjardins, Covadonga Bascaran, Sónia Silva, Ahmed A. Mohamedani, Krzysztof Cieslik, Naama Keren-Froim, Milo van Hoefen Wijsard, Mahmoud M. Elzembely, Marchelo Matua, Sidi Sidi Cheikh, Charlotta All-Eriksson, Ana Fernández-Teijeiro, Furahini G. Mndeme, Karin Lecuona, David Garcia Aldana, Katarzyna Pawinska-Wasikowska, Maja Beck Popovic, Léa Raobela, Vladimir Neroev, Remezo Philbert, Kareem Olatunbosun Musa, Gita Naidu, Mutale Nyaywa, Rolande L. Kabore, Shirley Sharabi, Erika Maka, Abubakar Kalinaki, Alaa Elhaddad, Charlotte Wolley Dod, Stanislava Hederová, Jenny M. Yanga, Nissrine Bennani Guebessi, Helen Jenkinson, Sally Painter, Russo Ida, Werner Wackernagel, Harba Tyau-Tyau, Honorio Barranco, Sadik Taju Sherief, Diriba F. Hordofa, Jonathan J. Pons, Bénédicte Brichard, David K Stones, Guilherme Castela, S.V. Saakyan, Peter Osei-Bonsu, Amal M. Elbahi, Zelalem Gizachew, Codruta Comsa, Ali Bala Umar, Mussagy M. Riheia, Manca Tekavčič Pompe, Elhassan Abdallah, Noa Kapelushnik, Sadiq Hassan, Magritha Du Bruyn, Rose Atsiaya, Robert M Lukamba, Tomáš Kepák, Freddy B. Mbumba, Karel Svojgr, Asmaa El Kettani, Branka Stirn Kranjc, Monika Csóka, Norbert Bornfeld, Pavel Pochop, Sonsoles San Roman Pacheco, Silvia Alarcón Portabella, Amelia D.C. Wime, Ngozi C Oguego, Keith M. Waddell, Nathalie Cassoux, Dina Elgalaly, Eva Biewald, Fatoumata Sylla, Pernille Axel Gregersen, Hamzah Mustak, Lamis Al Harby, Ada Aghaji, Othman Ao Ziko, Sharon Blum, Theophile B Amani Kabesha, Nick Astbury, Rokia C. Berete, Andrew W. Stacey, V.G. Polyakov, Kangwa I. Muma, Marianna Boehme, Vivian Paintsil, Richard Bowman, Vera Adobea Essuman, Koffi M. Guedenon, Amina H Wali Nigeria, Julia Balaguer, Maris Viksnins, Ismail Mayet, Tetyana Sorochynska, Patrick De Potter, Alketa Tandili, Lesia Lysytsia, Tatiana L Ushakova, Judy Schoeman, Sandra Valeina, Moawia Mohammed Ali Elhassan, Moira Gandiwa, Alice Kyara, M. Ashwin Reddy, Livia Lumbroso, Isac V. Da Gama, Marcia Zondervan, Zaza Khotenashvili, Hédi Bouguila, Azza Ma Said, Nadia Bobrova, Faraja S. Chiwanga, Christina Stathopoulos, Alan Davidson, Sarra Benmiloud, Francis L. Munier, Mayuri Makan, Eva S Lachmann, Gevorg Tamamyan, Romanzo Antonino, Ibrahim O. Matende, Guillermo Chantada, AO Adio, Jess Elio Kosh Komba Palet, Manoj Parulekar, Luisa Paiva, Trish A. Scanlan, Nir Gomel, Khalifa M. Alsawidi, Artur Klett, Violeta Chernodrinska, Ekhtelbenina Zein, Mandeep S. Sagoo, Sahadatou Adamou Boubacar, A. Oscar, Raffaele Parrozzani, McHikirwa S. Msina, David Reynders, Elizabeth D Nkanga, Gabriela Murgoi, Andrey A. Yarovoy, Dahiru Ribadu, PD Wade, Amadou I. Alfa Bio, Lorna Renner, Ted Grimbert A. Evina, Paule Aïda Ndoye Roth, Maria G. Correa Llano, Tuyisabe Theophile, and Andrzej Olechowski

Subjects
medicine.medical_specialty, Referral, Epidemiology, Retinal Neoplasms, Medizin, Disease, 03 medical and health sciences, Cellular and Molecular Neuroscience, 0302 clinical medicine, Risk Factors, Neoplasia, Medicine, Humans, business.industry, Retinoblastoma, Extraocular Retinoblastoma, medicine.disease, eye diseases, Sensory Systems, 3. Good health, Ophthalmology, Cross-Sectional Studies, 030220 oncology & carcinogenesis, Africa, 030221 ophthalmology & optometry, Health education, Residence, Presentation (obstetrics), Epidemiology, Neoplasia, business, human activities, Demography
Abstract

BackgroundThe 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.MethodsA 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.ResultsCapture 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, pConclusionsFewer 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.

Published
2020

14. 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

15. Institutional Mechanisms for the Rights and Protection of the Child in Albania, Their Practical Operation

Author

Tandili Alma

Abstract

For the functioning of the integrated child protection system, it is necessary to establish structures and make them operational responsible for policy making and their implementation on the issues affecting the rights and protection of the child. Receiving the recommendation to open accession negotiations for Albania's membership in the European Union places the institutions responsible for the approximation of legislation with responsibility. The new legal framework for the rights and protection of the child is designed in the spirit of the European Union by creating institutional mechanisms. This article will describe the functionality of these mechanisms in practice by highlighting field problems and concrete data on cases of children in need of protect.

Published
2021

16. Ophthalmic Manifestations and Type 4 of Hypersensitivity of Steven Johnson Syndrome-Toxic Epidermal Necrosis in Infants-Management and Literature Review

Author

Musa, Juna, primary, Abdullahu, Blina, additional, Guy, Ali, additional, Hallunovaj, Luela, additional, Elrefaei, Amro, additional, Barakat, Benan, additional, Kola, Ina, additional, Kola, Ermira, additional, Cepani, Holgena, additional, Mamica, Inva, additional, and Tandili, Alketa, additional

Published
2020
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17. Travel burden and clinical presentation of retinoblastoma: analysis of 1024 patients from 43 African countries and 518 patients from 40 European countries

Author

Fabian, Ido Didi, primary, Stacey, Andrew W, additional, Foster, Allen, additional, Kivelä, Tero T, additional, Munier, Francis L., additional, Keren-Froim, Naama, additional, Gomel, Nir, additional, Cassoux, Nathalie, additional, Sagoo, Mandeep S, additional, Reddy, M Ashwin, additional, Harby, Lamis Al, additional, Zondervan, Marcia, additional, Bascaran, Covadonga, additional, Abdallah, Elhassan, additional, Abdullahi, Shehu U, additional, Boubacar, Sahadatou Adamou, additional, Ademola-Popoola, Dupe S, additional, Adio, Adedayo, additional, Aghaji, Ada E, additional, Portabella, Silvia Alarcón, additional, Alfa Bio, Amadou I, additional, Ali, Amany M, additional, Alia, Donjeta B, additional, All-Eriksson, Charlotta, additional, Almeida, Argentino A, additional, Alsawidi, Khalifa M, additional, Antonino, Romanzo, additional, Astbury, Nicholas J, additional, Atsiaya, Rose, additional, Balaguer, Julia, additional, Balwierz, Walentyna, additional, Barranco, Honorio, additional, Popovic, Maja Beck, additional, Benmiloud, Sarra, additional, Guebessi, Nissrine Bennani, additional, Berete, Rokia C, additional, Biddulph, Shelley J, additional, Biewald, Eva M, additional, Blum, Sharon, additional, Bobrova, Nadia, additional, Boehme, Marianna, additional, Bornfeld, Norbert, additional, Bouda, Gabrielle C, additional, Bouguila, Hédi, additional, Boumedane, Amaria, additional, Brichard, Bénédicte G, additional, l, Michael Capra, additional, Castela, Guilherme, additional, Català-Mora, Jaume, additional, Chantada, Guillermo L, additional, Chernodrinska, Violeta S, additional, Chiwanga, Faraja S, additional, Cieslik, Krzysztof, additional, Comsa, Codruta, additional, Correa Llano, Maria G, additional, Csóka, Monika, additional, Da Gama, Isac V, additional, Davidson, Alan, additional, Potter, Patrick De, additional, Desjardins, Laurence, additional, Dragomir, Monica D, additional, Bruyn, Magritha Du, additional, Kettani, Asmaa El, additional, Elbahi, Amal M, additional, Elgalaly, Dina, additional, Elhaddad, Alaa M, additional, Ali Elhassan, Moawia M, additional, Elzembely, Mahmoud M, additional, Essuman, Vera A, additional, Evina, Ted Grimbert A, additional, Fasina, Oluyemi, additional, Fernández-Teijeiro, Ana, additional, Gandiwa, Moira, additional, Aldana, David García, additional, Geel, Jennifer A, additional, Gizachew, Zelalem, additional, Gregersen, Pernille A, additional, Guedenon, Koffi M, additional, Hadjistilianou, Theodora, additional, Hassan, Sadiq, additional, Hederova, Stanislava, additional, Hessissen, Laila, additional, Hordofa, Diriba F, additional, Hummlen, Marlies, additional, Husakova, Kristina, additional, Ida, Russo, additional, Ilic, Vesna R, additional, Jenkinson, Helen, additional, Amani Kabesha, Theophile B, additional, Kabore, Rolande L, additional, Kalinaki, Abubakar, additional, Kapelushnik, Noa, additional, Kardava, Tamar, additional, Kemilev, Pavlin Kroumov, additional, Kepak, Tomas, additional, Khotenashvili, Zaza, additional, Klett, Artur, additional, Kosh Komba Palet, Jess Elio, additional, Krivaitiene, Dalia, additional, Kruger, Mariana, additional, Kyara, Alice, additional, Lachmann, Eva S, additional, Latinović, Slobodanka, additional, Lecuona, Karin, additional, Lukamba, Robert M, additional, Lumbroso, Livia, additional, Lysytsia, Lesia, additional, Maka, Erika, additional, Makan, Mayuri, additional, Manda, Chatonda, additional, Begue, Nieves Martín, additional, Matende, Ibrahim O, additional, Matua, Marchelo, additional, Mayet, Ismail, additional, Mbumba, Freddy B, additional, Mengesha, Aemero A, additional, Midena, Edoardo, additional, Mndeme, Furahini G, additional, Mohamedani, Ahmed A, additional, Moll, Annette C, additional, Moreira, Claude, additional, Msina, Mchikirwa S, additional, Msukwa, Gerald, additional, Muma, Kangwa I, additional, Murgoi, Gabriela, additional, Musa, Kareem O, additional, Mustak, Hamzah, additional, Muyen, Okwen M, additional, Naidu, Gita, additional, Naumenko, Larisa, additional, Ndoye Roth, Paule Aïda, additional, Neroev, Vladimir, additional, Nikitovic, Marina, additional, Nkanga, Elizabeth D, additional, Nkumbe, Henry, additional, Nyaywa, Mutale, additional, Obono-Obiang, Ghislaine, additional, Oguego, Ngozi C, additional, Olechowski, Andrzej, additional, Oscar, Alexander Hugo, additional, Osei-Bonsu, Peter, additional, Painter, Sally L, additional, Paintsil, Vivian, additional, Paiva, Luisa, additional, Papyan, Ruzanna, additional, Parrozzani, Raffaele, additional, Parulekar, Manoj, additional, Pawinska-Wasikowska, Katarzyna, additional, Perić, Sanja, additional, Philbert, Remezo, additional, Pochop, Pavel, additional, Polyakov, Vladimir G, additional, Pompe, Manca T, additional, Pons, Jonathan J, additional, Raobela, Léa, additional, Renner, Lorna A, additional, Reynders, David, additional, Ribadu, Dahiru, additional, Riheia, Mussagy M, additional, Ritter-Sovinz, Petra, additional, Saakyan, Svetlana, additional, Said, Azza MA, additional, Román Pacheco, Sonsoles San, additional, Scanlan, Trish A, additional, Schoeman, Judy, additional, Seregard, Stefan, additional, Sherief, Sadik T, additional, Cheikh, Sidi Sidi, additional, Silva, Sónia, additional, Sorochynska, Tetyana, additional, Ssali, Grace, additional, Stathopoulos, Christina, additional, Kranjc, Branka Stirn, additional, Stones, David K, additional, Svojgr, Karel, additional, Sylla, Fatoumata, additional, Tamamyan, Gevorg, additional, Tandili, Alketa, additional, Tateshi, Bekim, additional, Theophile, Tuyisabe, additional, Traoré, Fousseyni, additional, Tyau-Tyau, Harba, additional, Umar, Ali B, additional, Urbak, Steen F, additional, Ushakova, Tatiana L, additional, Valeina, Sandra, additional, Hoefen Wijsard, Milo van, additional, Veleva-Krasteva, Nevyana V, additional, Viksnins, Maris, additional, Wackernagel, Werner, additional, Waddell, Keith, additional, Wade, Patricia D, additional, Wali Nigeria, Amina H, additional, Wime, Amelia DC, additional, Dod, Charlotte Wolley, additional, Yanga, Jenny M, additional, Yarovaya, Vera A, additional, Yarovoy, Andrey A, additional, Zein, Ekhtelbenina, additional, Sharabi, Shirley, additional, Zhilyaeva, Katsiaryna, additional, Ziko, Othman AO, additional, and Bowman, Richard, additional

Published
2020
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19. Albania

Author

Armela Xhaho and Alma Lleshi Tandili

Published
2019

20. VISUAL DEFICITS CAUSED BY REFRACTIVE ERRORS IN SCHOOL AND PRESCHOOL CHILDREN.

Author

Mahmudi, Ejup, Tandili, Alketa, Zhugli, Sulejman, Simaku, Artan, and Hoxha, Redi

Subjects
REFRACTIVE errors, SCHOOL children, RURAL children, VISUAL acuity, PRESCHOOL children, ASTIGMATISM
Abstract

Anomalies of refraction are the leading cause of low visual acuity in children. They can decrease the visual acuity for near (hypermetropia), for far (myopia) or for both (astigmatism). Their serious consequences are strabismus and amblyopia. The aim of the study is to measure the prevalence of anomalies of refraction. It is a transversal type of study, where were included 3-9 years old children in urban and rural area of the city of Tetovo, Macedonia. In the study participated 1848 children, 917 (49.6%) from them were females and 931 (50.4%) were males. 858 (46.4%) belonged to preschool agegroup 3-5 years and 990 (53.6%) to agegroup 6-9 years. Anomalies of refraction were found in 226 (12.2%) of children (95%CI10.74 – 13.77). Prevalence of anomalies of refraction 12.3%, from which 10.3% preschool children and 13.9% among school children. Prevalence of anomalies of refraction was 11.9% in females and 12.6% in males. Prevalence of Astigmatism was 5.5%, Hypermetropia 4.0% and Miopia 2.8%. Miopia was found more prevalent in 6-9 years old children. Anomalies of refraction and their consequences, amblyopia and strabismus should be diagnosed and treated in early childhood. [ABSTRACT FROM AUTHOR]

Published
2020
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21. Travel burden and clinical presentation of retinoblastoma: analysis of 1024 patients from 43 African countries and 518 patients from 40 European countries

Author

Fabian, Ido Didi, Stacey, Andrew W, Foster, Allen, Kivela¨, Tero T, Munier, Francis L., Keren-Froim, Naama, Gomel, Nir, Cassoux, Nathalie, Sagoo, Mandeep S, Reddy, M Ashwin, Harby, Lamis Al, Zondervan, Marcia, Bascaran, Covadonga, Abdallah, Elhassan, Abdullahi, Shehu U, Boubacar, Sahadatou Adamou, Ademola-Popoola, Dupe S, Adio, Adedayo, Aghaji, Ada E, Portabella, Silvia Alarcón, Alfa Bio, Amadou I, Ali, Amany M, Alia, Donjeta B, All-Eriksson, Charlotta, Almeida, Argentino A, Alsawidi, Khalifa M, Antonino, Romanzo, Astbury, Nicholas J, Atsiaya, Rose, Balaguer, Julia, Balwierz, Walentyna, Barranco, Honorio, Popovic, Maja Beck, Benmiloud, Sarra, Guebessi, Nissrine Bennani, Berete, Rokia C, Biddulph, Shelley J, Biewald, Eva M, Blum, Sharon, Bobrova, Nadia, Boehme, Marianna, Bornfeld, Norbert, Bouda, Gabrielle C, Bouguila, Hédi, Boumedane, Amaria, Brichard, Bénédicte G, l, Michael Capra, Castela, Guilherme, Català-Mora, Jaume, Chantada, Guillermo L, Chernodrinska, Violeta S, Chiwanga, Faraja S, Cieslik, Krzysztof, Comsa, Codruta, Correa Llano, Maria G, Csóka, Monika, Da Gama, Isac V, Davidson, Alan, Potter, Patrick De, Desjardins, Laurence, Dragomir, Monica D, Bruyn, Magritha Du, Kettani, Asmaa El, Elbahi, Amal M, Elgalaly, Dina, Elhaddad, Alaa M, Ali Elhassan, Moawia M, Elzembely, Mahmoud M, Essuman, Vera A, Evina, Ted Grimbert A, Fasina, Oluyemi, Fernández-Teijeiro, Ana, Gandiwa, Moira, Aldana, David García, Geel, Jennifer A, Gizachew, Zelalem, Gregersen, Pernille A, Guedenon, Koffi M, Hadjistilianou, Theodora, Hassan, Sadiq, Hederova, Stanislava, Hessissen, Laila, Hordofa, Diriba F, Hummlen, Marlies, Husakova, Kristina, Ida, Russo, Ilic, Vesna R, Jenkinson, Helen, Amani Kabesha, Theophile B, Kabore, Rolande L, Kalinaki, Abubakar, Kapelushnik, Noa, Kardava, Tamar, Kemilev, Pavlin Kroumov, Kepak, Tomas, Khotenashvili, Zaza, Klett, Artur, Kosh Komba Palet, Jess Elio, Krivaitiene, Dalia, Kruger, Mariana, Kyara, Alice, Lachmann, Eva S, Latinović, Slobodanka, Lecuona, Karin, Lukamba, Robert M, Lumbroso, Livia, Lysytsia, Lesia, Maka, Erika, Makan, Mayuri, Manda, Chatonda, Begue, Nieves Martín, Matende, Ibrahim O, Matua, Marchelo, Mayet, Ismail, Mbumba, Freddy B, Mengesha, Aemero A, Midena, Edoardo, Mndeme, Furahini G, Mohamedani, Ahmed A, Moll, Annette C, Moreira, Claude, Msina, Mchikirwa S, Msukwa, Gerald, Muma, Kangwa I, Murgoi, Gabriela, Musa, Kareem O, Mustak, Hamzah, Muyen, Okwen M, Naidu, Gita, Naumenko, Larisa, Ndoye Roth, Paule Ai¨da, Neroev, Vladimir, Nikitovic, Marina, Nkanga, Elizabeth D, Nkumbe, Henry, Nyaywa, Mutale, Obono-Obiang, Ghislaine, Oguego, Ngozi C, Olechowski, Andrzej, Oscar, Alexander Hugo, Osei-Bonsu, Peter, Painter, Sally L, Paintsil, Vivian, Paiva, Luisa, Papyan, Ruzanna, Parrozzani, Raffaele, Parulekar, Manoj, Pawinska-Wasikowska, Katarzyna, Perić, Sanja, Philbert, Remezo, Pochop, Pavel, Polyakov, Vladimir G, Pompe, Manca T, Pons, Jonathan J, Raobela, Léa, Renner, Lorna A, Reynders, David, Ribadu, Dahiru, Riheia, Mussagy M, Ritter-Sovinz, Petra, Saakyan, Svetlana, Said, Azza MA, Román Pacheco, Sonsoles San, Scanlan, Trish A, Schoeman, Judy, Seregard, Stefan, Sherief, Sadik T, Cheikh, Sidi Sidi, Silva, Sónia, Sorochynska, Tetyana, Ssali, Grace, Stathopoulos, Christina, Kranjc, Branka Stirn, Stones, David K, Svojgr, Karel, Sylla, Fatoumata, Tamamyan, Gevorg, Tandili, Alketa, Tateshi, Bekim, Theophile, Tuyisabe, Traoré, Fousseyni, Tyau-Tyau, Harba, Umar, Ali B, Urbak, Steen F, Ushakova, Tatiana L, Valeina, Sandra, Hoefen Wijsard, Milo van, Veleva-Krasteva, Nevyana V, Viksnins, Maris, Wackernagel, Werner, Waddell, Keith, Wade, Patricia D, Wali Nigeria, Amina H, Wime, Amelia DC, Dod, Charlotte Wolley, Yanga, Jenny M, Yarovaya, Vera A, Yarovoy, Andrey A, Zein, Ekhtelbenina, Sharabi, Shirley, Zhilyaeva, Katsiaryna, Ziko, Othman AO, and Bowman, Richard

Abstract

BackgroundThe 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.MethodsA cross-sectional analysis including 518 treatment-nai¨ve patients with retinoblastoma residing in 40 European countries and 1024 treatment-nai¨ve patients with retinoblastoma residing in 43 African countries.ResultsCapture 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.ConclusionsFewer 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.

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

Author

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

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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23. MANAGEMENT OF PEDIATRIC STRABISMUS.

Author

Tandili, Alketa and Zhungli, Sulejman

Subjects
STRABISMUS surgery, AMBLYOPIA
Abstract

Surgery for strabismus, a condition in which the visual axes of the eyes are not parallel and the eyes appear to be looking in different directions. The concern is that the brain may come to rely more on one eye than the other and that the part of the brain circuitry connected to the less-favored eye fails to develop properly, leading to amblyopia or blindness in that eye. The aim of this study was to assess the outcomes of surgical re-alignment of the eyes. The study was conducted at University Hospital Center "Mother Theresa" in Tirana, Albania. A total of 44 patients underwent strabismus surgery from 2013-2014. Age varied from a minimum of 1 year to a maximum of 14 years with a mean of 8 years. Regarding the gender distribution, females were 25 (57%) and males were 25 (57%) were using spectacles prior to the squint surgery. History of ocular trauma was present in 9 (20%) of patients. Similarly, abnormal head posture was present in 5 (11%) of patients. Extra ocular movements were full in 70% right eyes and 30% left eyes. Strabismus surgery is a common procedure and most patients will see a large improvement in the alignment of their eyes after surgery. Well aligned eyes also offer proven social and developmental benefits for children. [ABSTRACT FROM AUTHOR]

Published
2016

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