{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,8]],"date-time":"2026-10-08T14:21:36Z","timestamp":1791469296095,"version":"4.3.4"},"reference-count":31,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2021,12,16]],"date-time":"2021-12-16T00:00:00Z","timestamp":1639612800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc-nd\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Blood &amp; Cancer"],"published-print":{"date-parts":[[2022,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p><jats:bold>Background and aim<\/jats:bold>: The establishment of an international hospital\u2010based register (HBR) for the French African Pediatric Oncology Group (GFAOP) was a necessary step in the group's clinical research program. With help from the Sanofi Espoir Foundation's \u201cMy Child Matters\u201d program, the GFAOP resolved to develop an international HBR network to collect quality data on children attending the Pediatric Oncology Units (POUs).<\/jats:p><jats:p><jats:bold>Methods<\/jats:bold>: All children entering POUs from January 2016 to December 2018 were registered using an online questionnaire. Data collection included information on diagnosis, disease stage, demographics, socioeconomic status, and outcome. An intensive training program was developed to improve both data quality and quantity.<\/jats:p><jats:p><jats:bold>Results<\/jats:bold>: Among the 3348 children registered, 3230 had a suspected cancer, 681 were not confirmed. A diagnosis was confirmed on radiological, clinical, or histological examination for 2549 children including Burkitt lymphoma (516: 20%)\u2014the most frequent diagnosis, Wilms\u2019 tumor (459: 18%), retinoblastoma (357: 14%), and acute lymphoblastic leukemia (345: 13%). Of these, 2187 children were treated. Early deaths, abandonment, economic difficulties, and lack of equipment were some of the reasons offered to explain the numbers of undiagnosed and untreated children. Vital status is known for 1994 children: 1187 died and 807 were alive, 551 of these with a follow\u2010up\u00a0&gt;\u00a012 months.<\/jats:p><jats:p><jats:bold>Conclusion<\/jats:bold>: This work has provided reliable data on children attending the POUs, especially clarifying reasons and occasions for care rupture. The data will help to identify material, human resources, and staff training needs, to evaluate progress, and to encourage consideration of pediatric cancer in national cancer plans.<\/jats:p>","DOI":"10.1002\/pbc.29464","type":"journal-article","created":{"date-parts":[[2021,12,16]],"date-time":"2021-12-16T12:55:53Z","timestamp":1639659353000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":16,"title":["The development of an international childhood cancer hospital register database in 13 African countries. A project of the French African Pediatric Oncology Group (GFAOP)"],"prefix":"10.1002","volume":"69","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-6035-0254","authenticated-orcid":false,"given":"Brenda","family":"Mallon","sequence":"first","affiliation":[{"name":"GFAOP Gustave Roussy Villejuif  France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rolande","family":"Kabor\u00e9","sequence":"additional","affiliation":[{"name":"Centre Hospitalier Universitaire Yalgado Ou\u00e9draogo  Ouagadougou Burkina Faso"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Line","family":"Couitchere","sequence":"additional","affiliation":[{"name":"H\u00f4pital de Treichville  Abidjan Ivory Coast"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Fatou Binetou","family":"Akonde","sequence":"additional","affiliation":[{"name":"Unit\u00e9 d'oncologie p\u00e9diatrique, H\u00f4pital Aristide Le Dantec  Dakar Senegal"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert","family":"Lukamba","sequence":"additional","affiliation":[{"name":"Cliniques Universitaires de Lubumbashi (CUL) Democratic Republic of Congo (DRC)"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tank\u00e9l\u00e9 Ars\u00e8ne","family":"Dackono","sequence":"additional","affiliation":[{"name":"Service d'Oncologie P\u00e9diatrie CHU Gabriel Tour\u00e9 de Bamako  Mali"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mbolanirina Lala Rakotomahefa","family":"Narison","sequence":"additional","affiliation":[{"name":"CHU JRA Antananarivo  Madagascar"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mohammed","family":"Khattab","sequence":"additional","affiliation":[{"name":"H\u00f4pital d'Enfants CHU Ibn Sina Rabat  Morocco"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ang\u00e8le","family":"Pondy","sequence":"additional","affiliation":[{"name":"Centre M\u00e8re et Enfant de la Fondation Chantal Biya  Yaound\u00e9 Cameroon"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Faten","family":"Fedhila Ben Ayed","sequence":"additional","affiliation":[{"name":"H\u00f4pital d'Enfants B\u00e9chir Hamza de Tunis  Tunisia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Al\u00e9ine","family":"Budiongo","sequence":"additional","affiliation":[{"name":"Cliniques Universitaires de Kinshasa, DRC"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Koffi","family":"Guedenon","sequence":"additional","affiliation":[{"name":"Unit\u00e9 d'oncologie p\u00e9diatrique, CHU Sylvanus Olympio  Lom\u00e9 Togo"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Odile","family":"Oberlin","sequence":"additional","affiliation":[{"name":"GFAOP Gustave Roussy Villejuif  France"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Patte","sequence":"additional","affiliation":[{"name":"GFAOP Gustave Roussy Villejuif  France"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,12,16]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.21452"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.22746"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.23284"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/pbc.27101"},{"issue":"5","key":"e_1_2_7_6_1","first-page":"1","article-title":"Advanced Burkitt lymphoma in sub\u2010Saharan Africa pediatric units: results of the third prospective multicenter study of the groupe Franco\u2010Africain d'oncologie p\u00e9diatrique","author":"Bouda GC","year":"2019","journal-title":"J Glob Oncol"},{"issue":"5","key":"e_1_2_7_7_1","first-page":"1","article-title":"Treatment of Wilms tumor in sub\u2010Saharan Africa: results of the second French African pediatric oncology group study","author":"Yao AJ\u2010J","year":"2019","journal-title":"J Glob Oncol"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.7196\/SAJCH.2020.v14i3.01723"},{"key":"e_1_2_7_9_1","first-page":"288","volume-title":"Cancer Registration: Principles and Methods. 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