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2. Cancer data quality and harmonization in Europe: the experience of the BENCHISTA Project – international benchmarking of childhood cancer survival by stage

Author

Angela Lopez-Cortes, Fabio Didonè, Laura Botta, Lisa L. Hjalgrim, Zsuzsanna Jakab, Adela Cañete Nieto, Charles Stiller, Bernward Zeller, Gemma Gatta, Kathy Pritchard-Jones, The BENCHISTA Project Working Group, Joanne Aitken, Leisa O’Neil, Monika Hack, Ruth Ladenstein, Elizabeth Van Eycken, Nancy Van Damme, Lindsay Frazier, Beatriz De Camargo, Marceli de Oliveira Santos, Zdravka Valerianova, Dobrin Konstantinov, Sumit Gupta, Jason D Pole, Mario Sekerija, Jan Stary, Jaroslav Sterba, Jeanette F Winther, Keiu Paapsi, Brigitte Lacour, Emmanuel Desandes, Jacqueline Clavel, Claire Poulalhon, Friederike Erdmann, Eleni T Petridou, Evdoxia Bouka, Michael Mian, Rocco Galasso, Giuseppe Sampietro, Francesco Vetrano, Milena M Maule, Carlotta Sacerdote, Paola Ballotari, Emilia De Santis, Margherita Ferrante, Rosalia Ragusa, Luca Boni, Magda Rognoni, Rosalba Amodio, Lorenza Boschetti, Francesco Cuccaro, Danila Bruno, Antonio G Russo, Federico Gervasi, Maria L Gambino, Elisabetta Borciani, Maria Michiara, Lucia Mangone, Gianbattista Spagnoli, Stefano Ferretti, Fabio Falcini, Eugenia Spata, Sonia Manasse, Paola Coccia, Francesca Bella, Adele Caldarella, Teresa Intrieri, Tiziana Scuderi, Roberto V Rizzello, Massimo Rugge, Stefano Guzzinati, Deirdre Murray, Tomohiro Matsuda, Kayo Nakata, Miriam J Azzopardi, Aina H Dahlen, Johannesen Tom Børge, Jerzy Kowalczyk, Monika Jedrzejczyk, Gabriela Caldas, Mihaela Bucurenci, Dana Coza, Vesna Zadnik, Arantza Lopez de Munain, Fernando Almela-Vich, Nieves Fuster-Camarena, Ra f a e l Marcos-Gragera, Maria José Sanchez, Nuria Aragones, Raquel Lopez, Maria Dolores Chirlaque, Marcela Guevara, Elena Pardo, Rafael Peris-Bonet, Marià Carulla, Päivi Lähteenmäki, Claudia E Kuehni, Shelagh M Redmond, Henrike Karim-Kos, Paul Stacey, Lucy Irvine, Anna Gavin, Deirdre Fitzpatrick, David S Morrison, Karen Smith, Dyfed Wyn Huws, Janet Warlow, Sandra Strauss, Simon Bailey, Adela Canete Nieto, Nathalie Gaspar, Filippo Spreafico, Angela Polanco, Riccardo Capocaccia, Andrea Di Cataldo, and Meric Klein

Subjects
childhood cancer, population-based, cancer registry, Toronto staging, diagnosis, survival, Neoplasms. Tumors. Oncology. Including cancer and carcinogens, RC254-282
Abstract

IntroductionVariation in stage at diagnosis of childhood cancers (CC) may explain differences in survival rates observed across geographical regions. The BENCHISTA project aims to understand these differences and to encourage the application of the Toronto Staging Guidelines (TG) by Population-Based Cancer Registries (PBCRs) to the most common solid paediatric cancers.MethodsPBCRs within and outside Europe were invited to participate and identify all cases of Neuroblastoma, Wilms Tumour, Medulloblastoma, Ewing Sarcoma, Rhabdomyosarcoma and Osteosarcoma diagnosed in a consecutive three-year period (2014-2017) and apply TG at diagnosis. Other non-stage prognostic factors, treatment, progression/recurrence, and cause of death information were collected as optional variables. A minimum of three-year follow-up was required. To standardise TG application by PBCRs, on-line workshops led by six tumour-specific clinical experts were held. To understand the role of data availability and quality, a survey focused on data collection/sharing processes and a quality assurance exercise were generated. To support data harmonization and query resolution a dedicated email and a question-and-answers bank were created.Results67 PBCRs from 28 countries participated and provided a maximally de-personalized, patient-level dataset. For 26 PBCRs, data format and ethical approval obtained by the two sponsoring institutions (UCL and INT) was sufficient for data sharing. 41 participating PBCRs required a Data Transfer Agreement (DTA) to comply with data protection regulations. Due to heterogeneity found in legal aspects, 18 months were spent on finalizing the DTA. The data collection survey was answered by 68 respondents from 63 PBCRs; 44% of them confirmed the ability to re-consult a clinician in cases where stage ascertainment was difficult/uncertain. Of the total participating PBCRs, 75% completed the staging quality assurance exercise, with a median correct answer proportion of 92% [range: 70% (rhabdomyosarcoma) to 100% (Wilms tumour)].ConclusionDifferences in interpretation and processes required to harmonize general data protection regulations across countries were encountered causing delays in data transfer. Despite challenges, the BENCHISTA Project has established a large collaboration between PBCRs and clinicians to collect detailed and standardised TG at a population-level enhancing the understanding of the reasons for variation in overall survival rates for CC, stimulate research and improve national/regional child health plans.

Published
2023
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3. Worldwide trends in population-based survival for children, adolescents, and young adults diagnosed with leukaemia, by subtype, during 2000–14 (CONCORD-3): analysis of individual data from 258 cancer registries in 61 countries

Author

Bouzbid, Sabiha, Hamdi-Chérif, Mokhtar, Kara, Lamia, Meguenni, Kaouel, Regagba, Derbali, Bayo, Sine, Cheick Bougadari, Traore, Manraj, Shyam Shunker, Bendahhou, Karima, Ladipo, Akinade, Ogunbiyi, Olufemi, Somdyala, Nontuthuzelo, Chaplin, María Agustina, Moreno, Florencia, Calabrano, Gladis, Espinola, Silvia, Carballo Quintero, Beatriz, Fita, Rosalba, Laspada, Walter, Ibañez, Susana, Lima, Carlos, Mafra Da Costa, Allini, De Souza, Paulo César, Chaves, Juliana, Laporte, Cyntia, Curado, Maria Paula, de Oliveira, Jose Carlos, Veneziano, Claudia, Veneziano, Donaldo, Almeida, Ana Beatriz, Latorre, Maria, Azevedo e Silva, Gulnar, Rebelo, Marise, Santos, Marceli, Galaz, Juan, Aparicio Aravena, Mackarena, Sanhueza Monsalve, Jocelyn, Herrmann, Denise, Vargas, Solange, Herrera, Victor, Uribe, Claudia, Bravo, Luis Eduardo, Garcia, Luz Stella, Arias-Ortiz, Nelson, Morantes, Daniela, Jurado, Daniel, Yépez Chamorro, María, Delgado, Sandra, Ramirez, Melissa, Galán Alvarez, Yaima, Torres, Priscila, Martínez-Reyes, Fray, Jaramillo, Leyda, Quinto, Rina, Castillo, Jhoanna, Mendoza, Mariela, Cueva, Patricia, Yépez, José, Bhakkan, Bernard, Deloumeaux, Jacqueline, Joachim, Clarisse, Macni, Jonathan, Carrillo, Rodolfo, Shalkow Klincovstein, Jaime, Rivera Gomez, Rebeca, Perez, Patricia, Poquioma, Ebert, Tortolero-Luna, Guillermo, Zavala, Diego, Alonso, Rafael, Barrios, Enrique, Eckstrand, Angela, Nikiforuk, Cindy, Woods, Ryan, Noonan, Gail, Turner, Donna, Kumar, Eshwar, Zhang, Bin, Dowden, Jeff, Doyle, Gregory, Saint-Jacques, Nathalie, Walsh, Gordon, Anam, Aniq, De, Prithwish, McClure, Carol, Vriends, Kim, Bertrand, Christine, Ramanakumar, Agnihotram, Kozie, Serena, Stuart-Panko, Heather, Freeman, Tara, George, Justin, Avila, Rosa, O'Brien, David, Holt, Abby, Almon, Lyn, Ward, Kevin, Kwong, Sandy, Morris, Cyllene, Rycroft, Randi, Mueller, Lloyd, Phillips, Cathryn, Brown, Heather, Cromartie, Betsy, Ruterbusch, Julie, Schwartz, Ann, Levin, Gary, Wohler, Brad, Bayakly, Rana, Gomez, Scarlett, McKinley, Meg, Cress, Rosemary, Davis, Joni, Hernandez, Brenda, Johnson, Christopher, Morawski, Bozena, Ruppert, Laura, Bentler, Suzanne, Charlton, Mary, Huang, Bin, Tucker, Thomas, Deapen, Dennis, Liu, Lihua, Hsieh, Mei-Chin, Wu, Xiao-Cheng, Schwenn, Molly, Stern, Kimberly, Gershman, Susan, Knowlton, Richard, Alverson, Georgetta, Weaver, Tamara, Desai, Jay, Rogers, Deirdre, Jackson-Thompson, Jeanette, Lemons, Debbi, Zimmerman, Heather, Hood, Michelle, Roberts-Johnson, Jenifer, Hammond, Whitney, Rees, Judith, Pawlish, Karen, Stroup, Antoinette, Key, Charles, Wiggins, Charles, Kahn, Amy, Schymura, Maria, Radhakrishnan, Soundarya, Rao, Chandrika, Giljahn, Lynn, Slocumb, Roberta, Dabbs, Christy, Espinoza, Raffaella, Aird, Karen, Beran, Todd, Rubertone, Jim, Slack, Stephen, Oh, Junhie, Janes, Tiffany, Schwartz, Stephen, Chiodini, Stephanie, Hurley, Deborah, Whiteside, Martin, Rai, Saroj, Williams, Melanie, Herget, Kim, Sweeney, Carol, Johnson, Alison, Keitheri Cheteri, Mahesh, Migliore Santiago, Patti, Blankenship, Steven, Farley, Shawn, Borchers, Robert, Malicki, Robin, Espinoza, Julia, Grandpre, Joseph, Edwards, Brenda, Mariotto, Angela, Weir, Hannah, Wilson, Reda, Wang, Ning, Yang, Lei, Chen, Jian-Shun, He, Yu-Tong, Song, Guo-Hui, Gu, Xiao-Ping, Mei, Dan, Ge, Heng-Ming, Wu, Tong-Hao, Li, Yan-Yan, Zhao, De-Li, Jin, Feng, Zhang, Jian-Hua, Zhu, Feng-Dong, Junhua, Qian, Yang, Yan Lei, Jiang, Chun-Xiao, Biao, Wang, Wang, Jian, Li, Qi-Long, Yi, He, Zhou, Xin, Dong, JianMei, Li, WeiWei, Fu, Fang-Xian, Chen, Jian-Guo, Zhu, Jian, Li, Yan-Hua, Lu, Yu-Qiang, Fan, Min, Huang, Su-Qin, Guo, Guo-Ping, Zhaolai, Hua, Wei, Kuangrong, Chen, Wan-Qing, Wei, Wenqiang, Zeng, Hongmei, Demetriou, Anna, Mang, Wai Kong, Ngan, Kai Cheong, Kataki, Amal, Krishnatreya, Manigreeva, Jayalekshmi, Padmavathi Amma, Sebastian, Paul, George, Preethi, Mathew, Aleyamma, Nandakumar, Ambakumar, Malekzadeh, Reza, Roshandel, Gholamreza, Keinan-Boker, Lital, Silverman, Barbara, Ito, Hidemi, Koyanagi, Yuriko, Sato, Masako, Tobori, Fumio, Nakata, Ichiro, Teramoto, Norihiro, Hattori, Masakazu, Kaizaki, Yasuharu, Moki, Fumitaka, Sugiyama, Hiromi, Utada, Mai, Nishimura, Makiko, Yoshida, Keiichi, Kurosawa, Katsuki, Nemoto, Yuji, Narimatsu, Hiroto, Sakaguchi, Masahiko, Kanemura, Seiki, Naito, Michiko, Narisawa, Rintaro, Miyashiro, Isao, Nakata, Kayo, Mori, Daisuke, Yoshitake, Mayuko, Oki, Izumi, Fukushima, Norimasa, Shibata, Akiko, Iwasa, Keiichiro, Ono, Chie, Matsuda, Tomohiro, Nimri, Omar, Jung, Kyu-Won, Won, Young-Joo, Alawadhi, Eiman, Elbasmi, Amani, Ab Manan, Azizah, Adam, Farzaana, Nansalmaa, Erdenekhuu, Tudev, Undarmaa, Ochir, Chimedsuren, Al Khater, Al Hareth, El Mistiri, Mufid, Lim, Gek Hsiang, Teo, Yik Ying, Chiang, Chun-Ju, Lee, Wen-Chung, Buasom, Rangsiya, Sangrajrang, Suleeporn, Suwanrungruang, Krittika, Vatanasapt, Patravoot, Daoprasert, Karnchana, Pongnikorn, Donsuk, Leklob, Atit, Sangkitipaiboon, Somphob, Geater, Sarayut, Sriplung, Hutcha, Ceylan, Okan, Kög, Iskender, Dirican, Oya, Köse, Tülay, Gurbuz, Tulın, Karašahin, Füsun Emine, Turhan, Duygu, Aktaş, Umut, Halat, Yakup, Eser, Sultan, Yakut, Cankut, Altinisik, Merve, Cavusoglu, Yasar, Türkköylü, Ayşe, Üçüncü, Nuršen, Hackl, Monika, Zborovskaya, Anna, Aleinikova, Olga, Henau, Kris, Van Eycken, Liesbet, Atanasov, Trayan, Valerianova, Zdravka, Šekerija, Mario, Dušek, Ladislav, Zvolský, Miroslav, Steinrud Mørch, Lina, Storm, Hans, Wessel Skovlund, Charlotte, Innos, Kaire, Mägi, Margit, Malila, Nea, Seppä, Karri, Jégu, Jérémie, Velten, Michel, Cornet, Edouard, Troussard, Xavier, Bouvier, Anne-Marie, Guizard, Anne-Valérie, Bouvier, Véronique, Launoy, Guy, Dabakuyo Yonli, Sandrine, Poillot, Marie-Laure, Maynadié, Marc, Mounier, Morgane, Vaconnet, Lina, Woronoff, Anne-Sophie, Daoulas, Mélanie, Robaszkiewicz, Michel, Clavel, Jacqueline, Poulalhon, Claire, Desandes, Emmanuel, Lacour, Brigitte, Baldi, Isabelle, Pouchieu, Camille, Amadeo, Brice, Coureau, Gaëlle, Monnereau, Alain, Audoin, Magali, D'Almeida, Tania, Boyer, Séverine, Hammas, Karima, Trétarre, Brigitte, Colonna, Marc, Delafosse, Patricia, Plouvier, Sandrine, Cowppli-Bony, Anne, Molinié, Florence, Bara, Simona, Ganry, Olivier, Lapôtre-Ledoux, Bénédicte, Daubisse-Marliac, Laetitia, Bossard, Nadine, Estève, Jacques, Uhry, Zoé, Stabenow, Roland, Wilsdorf-Köhler, Heide, Eberle, Andrea, Luttmann, Sabine, Löhden, Imma, Nennecke, Alice, Kieschke, Joachim, Sirri, Eunice, Justenhoven, Christina, Zeissig, Sylke, Holleczek, Bernd, Eisemann, Nora, Katalinic, Alexander, Asquez, Rachelle, Kumar, Vijay, Petridou, Eleni, Ólafsdóttir, Elínborg, Tryggvadóttir, Laufey, Murray, Deirdre, Walsh, Paul, Sundseth, Hildrun, Mazzoleni, Guido, Vittadello, Fabio, Coviello, Enzo, Cuccaro, Francesco, Galasso, Rocco, Sampietro, Giuseppe, Magoni, Michele, Ardizzone, Antonino, D'Argenzio, Angelo, Di Prima, Alessia Anna, Ippolito, Antonella, Lavecchia, Anna Maria, Sutera Sardo, Antonella, Gola, Gemma, Ballotari, Paola, Giacomazzi, Erica, Ferretti, Stefano, Dal Maso, Luigino, Serraino, Diego, Celesia, Maria Vittoria, Filiberti, Rosa Angela, Pannozzo, Fabio, Melcarne, Anna, Quarta, Fabrizio, Andreano, Anita, Russo, Antonio Giampiero, Carrozzi, Giuliano, Cirilli, Claudia, Cavalieri d'Oro, Luca, Rognoni, Magda, Fusco, Mario, Vitale, Maria Francesca, Usala, Mario, Cusimano, Rosanna, Mazzucco, Walter, Michiara, Maria, Sgargi, Paolo, Boschetti, Lorenza, Chiaranda, Giorgio, Seghini, Pietro, Maule, Milena, Merletti, Franco, Spata, Eugenia, Tumino, Rosario, Mancuso, Pamela, Vicentini, Massimo, Cassetti, Tiziana, Sassatelli, Romano, Falcini, Fabio, Giorgetti, Stefania, Caiazzo, Anna Luisa, Cavallo, Rossella, Piras, Daniela, Bella, Francesca, Madeddu, Anselmo, Fanetti, Anna Clara, Maspero, Sergio, Carone, Simona, Mincuzzi, Antonia, Candela, Giuseppa, Scuderi, Tiziana, Gentilini, Maria Adalgisa, Rizzello, Roberto, Rosso, Stefano, Zanetti, Roberto, Caldarella, Adele, Intrieri, Teresa, Bianconi, Fortunato, Stracci, Fabrizio, Contiero, Paolo, Tagliabue, Giovanna, Rugge, Massimo, Zorzi, Manuel, Beggiato, Simonetta, Brustolin, Angelita, De Angelis, Roberta, Gatta, Gemma, Maurina, Anita, Oniščuka, Marija, Mousavi, Mohsen, Lipunova, Nadezda, Vincerzevskienė, Ieva, Agius, Dominic, Calleja, Neville, Siesling, Sabine, Visser, Otto, Johannesen, Tom, Larønningen, Siri, Trojanowski, Maciej, Mierzwa, Tomasz, Rachtan, Jadwiga, Kępska, Kamila, Kościańska, Beata, Wójcik-Tomaszewska, Joanna, Motnyk, Marcin, Gos, Anna, Bielska-Lasota, Magdalena, Didkowska, Joanna, Wojciechowska, Urszula, Forjaz de Lacerda, Gonçalo, Rego, Raul, Carrito, Branca, Pais, Ana, Bento, Maria José, Rodrigues, Jessica, Lourenço, Antonio, Mayer-da-Silva, Alexandra, Blaga, Luminita, Coza, Daniela, Valkov, Mikhail, Gusenkova, Lubov, Lazarevich, Olga, Prudnikova, Olga, Vjushkov, Dmitri Mikhailovich, Egorova, Alla, Orlov, Andrey, Pikalova, Lidiya, Zhuikova, Lilia, Adamcik, Juraj, Safaei Diba, Chakameh, Zadnik, Vesna, Zagar, Tina, De-La-Cruz, Marta, Lopez-de-Munain, Arantza, Aleman, Araceli, Rojas, Dolores, Chillarón, Rosario Jiménez, Navarro, Ana Isabel Marcos, Marcos-Gragera, Rafael, Puigdemont, Montse, Rodríguez-Barranco, Miguel, Sánchez Perez, María-José, Franch Sureda, Paula, Ramos Montserrat, Maria, Chirlaque López, Maria Dolores, Sánchez Gil, Antonia, Ardanaz, Eva, Guevara, Marcela, Cañete-Nieto, Adela, Peris-Bonet, Rafael, Carulla, Marià, Galceran, Jaume, Almela, Fernando, Sabater, Consol, Khan, Staffan, Pettersson, David, Dickman, Paul, Staehelin, Katharina, Struchen, Benjamin, Herrmann, Christian, Mousavi, Seyed Mohsen, Egger Hayoz, Céline, Bouchardy, Christine, Schaffar, Robin, Went, Philip, Bulliard, Jean-Luc, Maspoli-Conconi, Manuela, Kuehni, Claudia, Redmond, Shelagh, Bordoni, Andrea, Ortelli, Laura, Chiolero, Arnaud, Konzelmann, Isabelle, Rohrmann, Sabine, Wanner, Miriam, Broggio, John, Rashbass, Jem, Stiller, Charles, Fitzpatrick, Deirdre, Gavin, Anna, Morrison, David, Thomson, Catherine, Greene, Giles, Huws, Dyfed, Allemani, Claudia, Coleman, Michel, Di Carlo, Veronica, Girardi, Fabio, Matz, Melissa, Minicozzi, Pamela, Sanz, Natalia, Ssenyonga, Naomi, Stephens, Richard, Chalker, Elizabeth, Smith, Mirka, Gugusheff, Jessica, You, Hui, Qin Li, Shu, Dugdale, Sarah, Moore, Julie, Philpot, Shoni, Pfeiffer, Rhonda, Thomas, Helen, Silva Ragaini, Bruna, Venn, Alison, Evans, Sue, Te Marvelde, Luc, Savietto, Vedrana, Trevithick, Richard, Currow, David, Fowler, Christine, Lewis, Chris, Shalkow, Jaime, Bonaventure, Audrey, Wyn Huws, Dyfed, and Coleman, Michel P

Published
2022
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4. Survival and Health Care Burden of Children With Retinoblastoma in Europe.

Author

Virgili, Gianni, Capocaccia, Riccardo, Botta, Laura, Bennett, Damien, Hadjistilianou, Theodora, Innos, Kaire, Karim-Kos, Henrike, Kuehni, Claudia E., Kuhnel, Ursula, Mazzini, Cinzia, Canete Nieto, Adela, Paapsi, Keiu, Parravano, Mariacristina, Ronckers, Cécile M., Rossi, Silvia, Stiller, Charles, Vicini, Giulio, Visser, Otto, and Gatta, Gemma

Published
2024
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5. Phase I/II study of single-agent lenvatinib in children and adolescents with refractory or relapsed solid malignancies and young adults with osteosarcoma (ITCC-050)☆

Author

Gaspar, N., Campbell-Hewson, Q., Gallego Melcon, S., Locatelli, F., Venkatramani, R., Hecker-Nolting, S., Gambart, M., Bautista, F., Thebaud, E., Aerts, I., Morland, B., Rossig, C., Canete Nieto, A., Longhi, A., Lervat, C., Entz-Werle, N., Strauss, S.J., Marec-Berard, P., Okpara, C.E., He, C., Dutta, L., and Casanova, M.

Published
2021
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8. Interoperability Architecture for a Paediatric Oncology European Reference Network.

Author

NITZLNADER, Michael, CANETE NIETO, Adela, RIBELLES, Antonio Juan, BRUNMAIR, Barbara, LADENSTEIN, Ruth, and SCHREIER, Günter

Abstract

With the Directive 2011/24/EU on patients' rights in cross-border healthcare and the related delegated decisions, the European Commission defined a legal framework on how healthcare shall be organised by European Union (EU) member states (MS) where patients can move beyond the borders of their home country. Among other aspects, Article 12 of the directive is concerned with supporting MS with the development of so called European Reference Networks (ERN), dedicated to the treatment of "patients with a medical condition requiring a particular concentration of expertise in medical domains where expertise is rare". In the "European Expert Paediatric Oncology Reference Network for Diagnostics and Treatment" (ExPO-r-Net) project, the establishment of such an ERN in the domain of Paediatric Oncology is currently piloted. The present paper describes the high level use cases, the main requirements and a corresponding interoperability architecture capable to serve as the necessary IT platform to facilitate cross-border health data exchange. [ABSTRACT FROM AUTHOR]

Published
2016
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9. Long-term survival and cure fraction estimates for childhood cancer in Europe (EUROCARE-6): results from a population-based study

Author

Laura Botta, Gemma Gatta, Riccardo Capocaccia, Charles Stiller, Adela Cañete, Luigino Dal Maso, Kaire Innos, Ana Mihor, Friederike Erdmann, Claudia Spix, Brigitte Lacour, Rafael Marcos-Gragera, Deirdre Murray, Silvia Rossi, Monika Hackl, Elizabeth Van Eycken, Nancy Van Damme, Zdravka Valerianova, Mario Sekerija, Vasos Scoutellas, Anna Demetriou, Ladislav Dušek, Denisa Krejci, Hans Storm, Margit Mägi, Keiu Paapsi, Nea Malila, Janne Pitkäniemi, Valerie Jooste, Jacqueline Clavel, Claire Poulalhon, Emmanuel Desandes, Alain Monnereau, Alexander Katalinic, Eleni Petridou, Georgios Markozannes, Miklos Garami, Helgi Birgisson, Paul M Walsh, Guido Mazzoleni, Fabio Vittadello, Francesco Cuccaro, Rocco Galasso, Giuseppe Sampietro, Stefano Rosso, Cinzia Gasparotto, Giovanni Maifredi, Margherita Ferrante, Antonina Torrisi, Antonella Sutera Sardo, Maria Letizia Gambino, Monica Lanzoni, Paola Ballotari, Erica Giacomazzi, Stefano Ferretti, Adele Caldarella, Gianfranco Manneschi, Milena Sant, Paolo Baili, Franco Berrino, Annalisa Trama, Roberto Lillini, Alice Bernasconi, Simone Bonfarnuzzo, Claudia Vener, Fabio Didonè, Paolo Lasalvia, Giulia Del Monego, Lucia Buratti, Diego Serraino, Martina Taborelli, Roberta De Angelis, Elena Demuru, Corrado Di Benedetto, Mariano Santaquilani, Serenella Venanzi, Marco Tallon, Luca Boni, Silvia Iacovacci, Antonio Giampiero Russo, Federico Gervasi, Gianbattista Spagnoli, Luca Cavalieri d'Oro, Mario Fusco, Maria Francesca Vitale, Mario Usala, Francesco Vitale, Maria Michiara, Giorgio Chiranda, Carlotta Sacerdote, Milena Maule, Giuseppe Cascone, Eugenia Spata, Lucia Mangone, Fabio Falcini, Rossella Cavallo, Daniela Piras, Ylenia Dinaro, Marine Castaing, Anna Clara Fanetti, Sante Minerba, Giuseppina Candela, Tiziana Scuderi, Roberto Vito Rizzello, Fabrizio Stracci, Giovanna Tagliabue, Massimo Rugge, Angelita Brustolin, Santa Pildava, Giedre Smailyte, Miriam Azzopardi, Tom Børge Johannesen, Joanna Didkowska, Urszula Wojciechowska, Magdalena Bielska-Lasota, Ana Pais, Ana Maria Ferreira, Maria José Bento, Ana Miranda, Chakameh Safaei Diba, Vesna Zadnik, Tina Zagar, Carmen Sánchez-Contador Escudero, Paula Franch Sureda, Arantza Lopez de Munain, Marta De-La-Cruz, Marìa Dolores Rojas, Araceli Aleman, Ana Vizcaino, Fernando Almela, Arantza Sanvisens, Maria Josè Sanchez, Maria Dolores Chirlaque, Antonia Sanchez-Gil, Marcela Guevara, Eva Ardanaz, Adela Cañete-Nieto, Rafael Peris-Bonet, Jaume Galceran, Maria Carulla, Claudia Kuehni, Shelagh Redmond, Otto Visser, Henrike Karim-Kos, Sarah Stevens, Anna Gavin, David Morrison, Dyfed Wyn Huws, Botta, L, Gatta, G, Capocaccia, R, Stiller, C, Canete, A, Dal Maso, L, Innos, K, Mihor, A, Erdmann, F, Spix, C, Lacour, B, Marcos-Gragera, R, Murray, D, Rossi, S, Hackl, M, Van Eycken, E, Van Damme, N, Valerianova, Z, Sekerija, M, Scoutellas, V, Demetriou, A, Dusek, L, Krejci, D, Storm, H, Magi, M, Paapsi, K, Malila, N, Pitkaniemi, J, Jooste, V, Clavel, J, Poulalhon, C, Desandes, E, Monnereau, A, Katalinic, A, Petridou, E, Markozannes, G, Garami, M, Birgisson, H, Walsh, P, Mazzoleni, G, Vittadello, F, Cuccaro, F, Galasso, R, Sampietro, G, Rosso, S, Gasparotto, C, Maifredi, G, Ferrante, M, Torrisi, A, Sutera Sardo, A, Gambino, M, Lanzoni, M, Ballotari, P, Giacomazzi, E, Ferretti, S, Caldarella, A, Manneschi, G, Sant, M, Baili, P, Berrino, F, Trama, A, Lillini, R, Bernasconi, A, Bonfarnuzzo, S, Vener, C, Didone, F, Lasalvia, P, Del Monego, G, Buratti, L, Serraino, D, Taborelli, M, De Angelis, R, Demuru, E, Di Benedetto, C, Santaquilani, M, Venanzi, S, Tallon, M, Boni, L, Iacovacci, S, Russo, A, Gervasi, F, Spagnoli, G, Cavalieri d'Oro, L, Fusco, M, Vitale, M, Usala, M, Vitale, F, Michiara, M, Chiranda, G, Sacerdote, C, Maule, M, Cascone, G, Spata, E, Mangone, L, Falcini, F, Cavallo, R, Piras, D, Dinaro, Y, Castaing, M, Fanetti, A, Minerba, S, Candela, G, Scuderi, T, Rizzello, R, Stracci, F, Tagliabue, G, Rugge, M, Brustolin, A, Pildava, S, Smailyte, G, Azzopardi, M, Johannesen, T, Didkowska, J, Wojciechowska, U, Bielska-Lasota, M, Pais, A, Ferreira, A, Bento, M, Miranda, A, Safaei Diba, C, Zadnik, V, Zagar, T, Sanchez-Contador Escudero, C, Franch Sureda, P, Lopez de Munain, A, De-La-Cruz, M, Rojas, M, Aleman, A, Vizcaino, A, Almela, F, Sanvisens, A, Sanchez, M, Chirlaque, M, Sanchez-Gil, A, Guevara, M, Ardanaz, E, Canete-Nieto, A, Peris-Bonet, R, Galceran, J, Carulla, M, Kuehni, C, Redmond, S, Visser, O, Karim-Kos, H, Stevens, S, Gavin, A, Morrison, D, and Huws, D

Subjects
Retinal Neoplasms, Retinoblastoma, Bone Neoplasms, Sarcoma, Ewing, EUROCARE-6, survival, Burkitt Lymphoma, population-based cancer registrie, Europe, Oncology, Humans, cure fraction, childhood cancer, EUROCARE, Child, chidlhood cancer
Abstract

Background: The EUROCARE-5 study revealed disparities in childhood cancer survival among European countries, giving rise to important initiatives across Europe to reduce the gap. Extending its representativeness through increased coverage of eastern European countries, the EUROCARE-6 study aimed to update survival progress across countries and years of diagnosis and provide new analytical perspectives on estimates of long-term survival and the cured fraction of patients with childhood cancer. Methods: In this population-based study, we analysed 135 847 children (aged 0–14 years) diagnosed during 2000–13 and followed up to the end of 2014, recruited from 80 population-based cancer registries in 31 European countries. We calculated age-adjusted 5-year survival differences by country and over time using period analysis, for all cancers combined and for major cancer types. We applied a variant of standard mixture cure models for survival data to estimate the cure fraction of patients by childhood cancer and to estimate projected 15-year survival. Findings: 5-year survival for all childhood cancer combined in Europe in 2010–14 was 81% (95% CI 81–82), showing an increase of three percentage points compared with 2004–06. Significant progress over time was observed for almost all cancers. Survival remained stable for osteosarcomas, Ewing sarcoma, Burkitt lymphoma, non-Hodgkin lymphomas, and rhabdomyoscarcomas. For all cancers combined, inequalities still persisted among European countries (with age-adjusted 5-year survival ranging from 71% [95% CI 60–79] to 87% [77–93]). The 15-year survival projection for all patients with childhood cancer diagnosed in 2010–13 was 78%. We estimated the yearly long-term mortality rate due to causes other than the diagnosed cancer to be around 2 per 1000 patients for all childhood cancer combined, but to approach zero for retinoblastoma. The cure fraction for patients with childhood cancer increased over time from 74% (95% CI 73–75) in 1998–2001 to 80% (79–81) in 2010–13. In the latter cohort, the cure fraction rate ranged from 99% (95% CI 74–100) for retinoblastoma to 60% (58–63) for CNS tumours and reached 90% (95% CI 87–93) for lymphoid leukaemia and 70% (67–73) for acute myeloid leukaemia. Interpretation: Childhood cancer survival is increasing over time in Europe but there are still some differences among countries. Regular monitoring of childhood cancer survival and estimation of the cure fraction through population-based registry data are crucial for evaluating advances in paediatric cancer care. Funding: European Commission.

Published
2022

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