Recommendations for Long-Term Follow-up of Adults with Heritable Retinoblastoma

Autores
Tonorezos, Emily S.; Friedman, Danielle Novetsky; Barnea, Dana; Bosscha, Machteld I.; Chantada, Guillermo Luis; Dommering, Charlotte J.; de Graaf, Pim; Dunkel, Ira J.; Fabius, Armida W.M.; Francis, Jasmine H.; Greer, Mary Louise C.; Kleinerman, Ruth A.; Kors, Wijnanda A.; Laughlin, Suzanne; Moll, Annette C.; Morton, Lindsay M.; Temming, Petra; Tucker, Margaret A.; van Leeuwen, Flora E.; Walsh, Michael F.; Oeffinger, Kevin C.; Abramson, David
Año de publicación
2020
Idioma
inglés
Tipo de recurso
artículo
Estado
versión publicada
Descripción
Purpose: To generate recommendations for long-term follow-up of adult survivors of heritable retinoblastoma. Design: We convened a meeting of providers from retinoblastoma centers around the world to review the state of the science and to evaluate the published evidence. Participants: Retinoblastoma is a rare childhood cancer of the retina. Approximately 40% of retinoblastoma cases are heritable, resulting from a germline mutation in RB1. Dramatic improvements in treatment and supportive care have resulted in a growing adult survivor population. However, survivors of heritable retinoblastoma have a significantly increased risk of subsequent malignant neoplasms, particularly bone and soft tissue sarcomas, uterine leiomyosarcoma, melanomas, and radiotherapy-related central nervous system tumors, which are associated with excess morbidity and mortality. Despite these risks, no surveillance recommendations for this population currently are in place, and surveillance practices vary widely by center. Methods: Following the Institute of Medicine procedure for clinical practice guideline development, a PubMed, EMBASE, and Web of Science search was performed, resulting in 139 articles; after abstract and full-text review, 37 articles underwent detailed data abstraction to quantify risk and evidence regarding surveillance, if available. During an in-person meeting, evidence was presented and discussed, resulting in consensus recommendations. Main Outcome Measures: Diagnosis and mortality from subsequent neoplasm. Results: Although evidence for risk of subsequent neoplasm, especially sarcoma and melanoma, was significant, evidence supporting routine testing of asymptomatic survivors was not identified. Skin examination for melanoma and prompt evaluation of signs and symptoms of head and neck disease were determined to be prudent. Conclusions: This review of the literature confirmed some of the common second cancers in retinoblastoma survivors but found little evidence for a benefit from currently available surveillance for these malignancies. Future research should incorporate international partners, patients, and family members.
Fil: Tonorezos, Emily S.. Memorial Sloan Kettering Cancer Center; Estados Unidos. Weill Cornell Medical College; Estados Unidos
Fil: Friedman, Danielle Novetsky. Memorial Sloan Kettering Cancer Center; Estados Unidos
Fil: Barnea, Dana. Tel Aviv Sourasky Medical Center; Israel
Fil: Bosscha, Machteld I.. Vrije Universiteit Amsterdam; Países Bajos
Fil: Chantada, Guillermo Luis. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Gobierno de la Ciudad de Buenos Aires. Hospital de Pediatría "Juan P. Garrahan"; Argentina
Fil: Dommering, Charlotte J.. Vrije Universiteit Amsterdam; Países Bajos
Fil: de Graaf, Pim. Vrije Universiteit Amsterdam; Países Bajos
Fil: Dunkel, Ira J.. Weill Cornell Medicine; Estados Unidos. Memorial Sloan Kettering Cancer Center; Estados Unidos
Fil: Fabius, Armida W.M.. Vrije Universiteit Amsterdam; Países Bajos
Fil: Francis, Jasmine H.. Memorial Sloan Kettering Cancer Center; Estados Unidos
Fil: Greer, Mary Louise C.. University Of Toronto. Hospital For Sick Children; Canadá
Fil: Kleinerman, Ruth A.. National Institutes of Health; Estados Unidos
Fil: Kors, Wijnanda A.. Vrije Universiteit Amsterdam; Países Bajos
Fil: Laughlin, Suzanne. University Of Toronto. Hospital For Sick Children; Canadá
Fil: Moll, Annette C.. Vrije Universiteit Amsterdam; Países Bajos
Fil: Morton, Lindsay M.. National Institutes of Health; Estados Unidos
Fil: Temming, Petra. Universitat Essen; Alemania
Fil: Tucker, Margaret A.. National Institutes of Health; Estados Unidos
Fil: van Leeuwen, Flora E.. The Netherlands Cancer Institute; Países Bajos
Fil: Walsh, Michael F.. Memorial Sloan-kettering Cancer Center; España
Fil: Oeffinger, Kevin C.. University of Duke; Estados Unidos
Fil: Abramson, David. Memorial Sloan-kettering Cancer Center; España. Weill Cornell Medicine; Estados Unidos
Materia
Retinoblastoma
Second tumors
Survivor
Radiotherapy
Nivel de accesibilidad
acceso abierto
Condiciones de uso
https://creativecommons.org/licenses/by-nc-nd/2.5/ar/
Repositorio
CONICET Digital (CONICET)
Institución
Consejo Nacional de Investigaciones Científicas y Técnicas
OAI Identificador
oai:ri.conicet.gov.ar:11336/172479

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network_name_str CONICET Digital (CONICET)
spelling Recommendations for Long-Term Follow-up of Adults with Heritable RetinoblastomaTonorezos, Emily S.Friedman, Danielle NovetskyBarnea, DanaBosscha, Machteld I.Chantada, Guillermo LuisDommering, Charlotte J.de Graaf, PimDunkel, Ira J.Fabius, Armida W.M.Francis, Jasmine H.Greer, Mary Louise C.Kleinerman, Ruth A.Kors, Wijnanda A.Laughlin, SuzanneMoll, Annette C.Morton, Lindsay M.Temming, PetraTucker, Margaret A.van Leeuwen, Flora E.Walsh, Michael F.Oeffinger, Kevin C.Abramson, DavidRetinoblastomaSecond tumorsSurvivorRadiotherapyhttps://purl.org/becyt/ford/3.2https://purl.org/becyt/ford/3Purpose: To generate recommendations for long-term follow-up of adult survivors of heritable retinoblastoma. Design: We convened a meeting of providers from retinoblastoma centers around the world to review the state of the science and to evaluate the published evidence. Participants: Retinoblastoma is a rare childhood cancer of the retina. Approximately 40% of retinoblastoma cases are heritable, resulting from a germline mutation in RB1. Dramatic improvements in treatment and supportive care have resulted in a growing adult survivor population. However, survivors of heritable retinoblastoma have a significantly increased risk of subsequent malignant neoplasms, particularly bone and soft tissue sarcomas, uterine leiomyosarcoma, melanomas, and radiotherapy-related central nervous system tumors, which are associated with excess morbidity and mortality. Despite these risks, no surveillance recommendations for this population currently are in place, and surveillance practices vary widely by center. Methods: Following the Institute of Medicine procedure for clinical practice guideline development, a PubMed, EMBASE, and Web of Science search was performed, resulting in 139 articles; after abstract and full-text review, 37 articles underwent detailed data abstraction to quantify risk and evidence regarding surveillance, if available. During an in-person meeting, evidence was presented and discussed, resulting in consensus recommendations. Main Outcome Measures: Diagnosis and mortality from subsequent neoplasm. Results: Although evidence for risk of subsequent neoplasm, especially sarcoma and melanoma, was significant, evidence supporting routine testing of asymptomatic survivors was not identified. Skin examination for melanoma and prompt evaluation of signs and symptoms of head and neck disease were determined to be prudent. Conclusions: This review of the literature confirmed some of the common second cancers in retinoblastoma survivors but found little evidence for a benefit from currently available surveillance for these malignancies. Future research should incorporate international partners, patients, and family members.Fil: Tonorezos, Emily S.. Memorial Sloan Kettering Cancer Center; Estados Unidos. Weill Cornell Medical College; Estados UnidosFil: Friedman, Danielle Novetsky. Memorial Sloan Kettering Cancer Center; Estados UnidosFil: Barnea, Dana. Tel Aviv Sourasky Medical Center; IsraelFil: Bosscha, Machteld I.. Vrije Universiteit Amsterdam; Países BajosFil: Chantada, Guillermo Luis. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Gobierno de la Ciudad de Buenos Aires. Hospital de Pediatría "Juan P. Garrahan"; ArgentinaFil: Dommering, Charlotte J.. Vrije Universiteit Amsterdam; Países BajosFil: de Graaf, Pim. Vrije Universiteit Amsterdam; Países BajosFil: Dunkel, Ira J.. Weill Cornell Medicine; Estados Unidos. Memorial Sloan Kettering Cancer Center; Estados UnidosFil: Fabius, Armida W.M.. Vrije Universiteit Amsterdam; Países BajosFil: Francis, Jasmine H.. Memorial Sloan Kettering Cancer Center; Estados UnidosFil: Greer, Mary Louise C.. University Of Toronto. Hospital For Sick Children; CanadáFil: Kleinerman, Ruth A.. National Institutes of Health; Estados UnidosFil: Kors, Wijnanda A.. Vrije Universiteit Amsterdam; Países BajosFil: Laughlin, Suzanne. University Of Toronto. Hospital For Sick Children; CanadáFil: Moll, Annette C.. Vrije Universiteit Amsterdam; Países BajosFil: Morton, Lindsay M.. National Institutes of Health; Estados UnidosFil: Temming, Petra. Universitat Essen; AlemaniaFil: Tucker, Margaret A.. National Institutes of Health; Estados UnidosFil: van Leeuwen, Flora E.. The Netherlands Cancer Institute; Países BajosFil: Walsh, Michael F.. Memorial Sloan-kettering Cancer Center; EspañaFil: Oeffinger, Kevin C.. University of Duke; Estados UnidosFil: Abramson, David. Memorial Sloan-kettering Cancer Center; España. Weill Cornell Medicine; Estados UnidosElsevier Science Inc.2020-11info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionhttp://purl.org/coar/resource_type/c_6501info:ar-repo/semantics/articuloapplication/pdfapplication/pdfhttp://hdl.handle.net/11336/172479Tonorezos, Emily S.; Friedman, Danielle Novetsky; Barnea, Dana; Bosscha, Machteld I.; Chantada, Guillermo Luis; et al.; Recommendations for Long-Term Follow-up of Adults with Heritable Retinoblastoma; Elsevier Science Inc.; Ophthalmology; 127; 11; 11-2020; 1549-15570161-64201549-4713CONICET DigitalCONICETenginfo:eu-repo/semantics/altIdentifier/doi/10.1016/j.ophtha.2020.05.024info:eu-repo/semantics/altIdentifier/url/https://www.sciencedirect.com/science/article/abs/pii/S0161642020304620info:eu-repo/semantics/openAccesshttps://creativecommons.org/licenses/by-nc-nd/2.5/ar/reponame:CONICET Digital (CONICET)instname:Consejo Nacional de Investigaciones Científicas y Técnicas2025-11-26T08:55:01Zoai:ri.conicet.gov.ar:11336/172479instacron:CONICETInstitucionalhttp://ri.conicet.gov.ar/Organismo científico-tecnológicoNo correspondehttp://ri.conicet.gov.ar/oai/requestdasensio@conicet.gov.ar; lcarlino@conicet.gov.arArgentinaNo correspondeNo correspondeNo correspondeopendoar:34982025-11-26 08:55:01.294CONICET Digital (CONICET) - Consejo Nacional de Investigaciones Científicas y Técnicasfalse
dc.title.none.fl_str_mv Recommendations for Long-Term Follow-up of Adults with Heritable Retinoblastoma
title Recommendations for Long-Term Follow-up of Adults with Heritable Retinoblastoma
spellingShingle Recommendations for Long-Term Follow-up of Adults with Heritable Retinoblastoma
Tonorezos, Emily S.
Retinoblastoma
Second tumors
Survivor
Radiotherapy
title_short Recommendations for Long-Term Follow-up of Adults with Heritable Retinoblastoma
title_full Recommendations for Long-Term Follow-up of Adults with Heritable Retinoblastoma
title_fullStr Recommendations for Long-Term Follow-up of Adults with Heritable Retinoblastoma
title_full_unstemmed Recommendations for Long-Term Follow-up of Adults with Heritable Retinoblastoma
title_sort Recommendations for Long-Term Follow-up of Adults with Heritable Retinoblastoma
dc.creator.none.fl_str_mv Tonorezos, Emily S.
Friedman, Danielle Novetsky
Barnea, Dana
Bosscha, Machteld I.
Chantada, Guillermo Luis
Dommering, Charlotte J.
de Graaf, Pim
Dunkel, Ira J.
Fabius, Armida W.M.
Francis, Jasmine H.
Greer, Mary Louise C.
Kleinerman, Ruth A.
Kors, Wijnanda A.
Laughlin, Suzanne
Moll, Annette C.
Morton, Lindsay M.
Temming, Petra
Tucker, Margaret A.
van Leeuwen, Flora E.
Walsh, Michael F.
Oeffinger, Kevin C.
Abramson, David
author Tonorezos, Emily S.
author_facet Tonorezos, Emily S.
Friedman, Danielle Novetsky
Barnea, Dana
Bosscha, Machteld I.
Chantada, Guillermo Luis
Dommering, Charlotte J.
de Graaf, Pim
Dunkel, Ira J.
Fabius, Armida W.M.
Francis, Jasmine H.
Greer, Mary Louise C.
Kleinerman, Ruth A.
Kors, Wijnanda A.
Laughlin, Suzanne
Moll, Annette C.
Morton, Lindsay M.
Temming, Petra
Tucker, Margaret A.
van Leeuwen, Flora E.
Walsh, Michael F.
Oeffinger, Kevin C.
Abramson, David
author_role author
author2 Friedman, Danielle Novetsky
Barnea, Dana
Bosscha, Machteld I.
Chantada, Guillermo Luis
Dommering, Charlotte J.
de Graaf, Pim
Dunkel, Ira J.
Fabius, Armida W.M.
Francis, Jasmine H.
Greer, Mary Louise C.
Kleinerman, Ruth A.
Kors, Wijnanda A.
Laughlin, Suzanne
Moll, Annette C.
Morton, Lindsay M.
Temming, Petra
Tucker, Margaret A.
van Leeuwen, Flora E.
Walsh, Michael F.
Oeffinger, Kevin C.
Abramson, David
author2_role author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
author
dc.subject.none.fl_str_mv Retinoblastoma
Second tumors
Survivor
Radiotherapy
topic Retinoblastoma
Second tumors
Survivor
Radiotherapy
purl_subject.fl_str_mv https://purl.org/becyt/ford/3.2
https://purl.org/becyt/ford/3
dc.description.none.fl_txt_mv Purpose: To generate recommendations for long-term follow-up of adult survivors of heritable retinoblastoma. Design: We convened a meeting of providers from retinoblastoma centers around the world to review the state of the science and to evaluate the published evidence. Participants: Retinoblastoma is a rare childhood cancer of the retina. Approximately 40% of retinoblastoma cases are heritable, resulting from a germline mutation in RB1. Dramatic improvements in treatment and supportive care have resulted in a growing adult survivor population. However, survivors of heritable retinoblastoma have a significantly increased risk of subsequent malignant neoplasms, particularly bone and soft tissue sarcomas, uterine leiomyosarcoma, melanomas, and radiotherapy-related central nervous system tumors, which are associated with excess morbidity and mortality. Despite these risks, no surveillance recommendations for this population currently are in place, and surveillance practices vary widely by center. Methods: Following the Institute of Medicine procedure for clinical practice guideline development, a PubMed, EMBASE, and Web of Science search was performed, resulting in 139 articles; after abstract and full-text review, 37 articles underwent detailed data abstraction to quantify risk and evidence regarding surveillance, if available. During an in-person meeting, evidence was presented and discussed, resulting in consensus recommendations. Main Outcome Measures: Diagnosis and mortality from subsequent neoplasm. Results: Although evidence for risk of subsequent neoplasm, especially sarcoma and melanoma, was significant, evidence supporting routine testing of asymptomatic survivors was not identified. Skin examination for melanoma and prompt evaluation of signs and symptoms of head and neck disease were determined to be prudent. Conclusions: This review of the literature confirmed some of the common second cancers in retinoblastoma survivors but found little evidence for a benefit from currently available surveillance for these malignancies. Future research should incorporate international partners, patients, and family members.
Fil: Tonorezos, Emily S.. Memorial Sloan Kettering Cancer Center; Estados Unidos. Weill Cornell Medical College; Estados Unidos
Fil: Friedman, Danielle Novetsky. Memorial Sloan Kettering Cancer Center; Estados Unidos
Fil: Barnea, Dana. Tel Aviv Sourasky Medical Center; Israel
Fil: Bosscha, Machteld I.. Vrije Universiteit Amsterdam; Países Bajos
Fil: Chantada, Guillermo Luis. Consejo Nacional de Investigaciones Científicas y Técnicas; Argentina. Gobierno de la Ciudad de Buenos Aires. Hospital de Pediatría "Juan P. Garrahan"; Argentina
Fil: Dommering, Charlotte J.. Vrije Universiteit Amsterdam; Países Bajos
Fil: de Graaf, Pim. Vrije Universiteit Amsterdam; Países Bajos
Fil: Dunkel, Ira J.. Weill Cornell Medicine; Estados Unidos. Memorial Sloan Kettering Cancer Center; Estados Unidos
Fil: Fabius, Armida W.M.. Vrije Universiteit Amsterdam; Países Bajos
Fil: Francis, Jasmine H.. Memorial Sloan Kettering Cancer Center; Estados Unidos
Fil: Greer, Mary Louise C.. University Of Toronto. Hospital For Sick Children; Canadá
Fil: Kleinerman, Ruth A.. National Institutes of Health; Estados Unidos
Fil: Kors, Wijnanda A.. Vrije Universiteit Amsterdam; Países Bajos
Fil: Laughlin, Suzanne. University Of Toronto. Hospital For Sick Children; Canadá
Fil: Moll, Annette C.. Vrije Universiteit Amsterdam; Países Bajos
Fil: Morton, Lindsay M.. National Institutes of Health; Estados Unidos
Fil: Temming, Petra. Universitat Essen; Alemania
Fil: Tucker, Margaret A.. National Institutes of Health; Estados Unidos
Fil: van Leeuwen, Flora E.. The Netherlands Cancer Institute; Países Bajos
Fil: Walsh, Michael F.. Memorial Sloan-kettering Cancer Center; España
Fil: Oeffinger, Kevin C.. University of Duke; Estados Unidos
Fil: Abramson, David. Memorial Sloan-kettering Cancer Center; España. Weill Cornell Medicine; Estados Unidos
description Purpose: To generate recommendations for long-term follow-up of adult survivors of heritable retinoblastoma. Design: We convened a meeting of providers from retinoblastoma centers around the world to review the state of the science and to evaluate the published evidence. Participants: Retinoblastoma is a rare childhood cancer of the retina. Approximately 40% of retinoblastoma cases are heritable, resulting from a germline mutation in RB1. Dramatic improvements in treatment and supportive care have resulted in a growing adult survivor population. However, survivors of heritable retinoblastoma have a significantly increased risk of subsequent malignant neoplasms, particularly bone and soft tissue sarcomas, uterine leiomyosarcoma, melanomas, and radiotherapy-related central nervous system tumors, which are associated with excess morbidity and mortality. Despite these risks, no surveillance recommendations for this population currently are in place, and surveillance practices vary widely by center. Methods: Following the Institute of Medicine procedure for clinical practice guideline development, a PubMed, EMBASE, and Web of Science search was performed, resulting in 139 articles; after abstract and full-text review, 37 articles underwent detailed data abstraction to quantify risk and evidence regarding surveillance, if available. During an in-person meeting, evidence was presented and discussed, resulting in consensus recommendations. Main Outcome Measures: Diagnosis and mortality from subsequent neoplasm. Results: Although evidence for risk of subsequent neoplasm, especially sarcoma and melanoma, was significant, evidence supporting routine testing of asymptomatic survivors was not identified. Skin examination for melanoma and prompt evaluation of signs and symptoms of head and neck disease were determined to be prudent. Conclusions: This review of the literature confirmed some of the common second cancers in retinoblastoma survivors but found little evidence for a benefit from currently available surveillance for these malignancies. Future research should incorporate international partners, patients, and family members.
publishDate 2020
dc.date.none.fl_str_mv 2020-11
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
http://purl.org/coar/resource_type/c_6501
info:ar-repo/semantics/articulo
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv http://hdl.handle.net/11336/172479
Tonorezos, Emily S.; Friedman, Danielle Novetsky; Barnea, Dana; Bosscha, Machteld I.; Chantada, Guillermo Luis; et al.; Recommendations for Long-Term Follow-up of Adults with Heritable Retinoblastoma; Elsevier Science Inc.; Ophthalmology; 127; 11; 11-2020; 1549-1557
0161-6420
1549-4713
CONICET Digital
CONICET
url http://hdl.handle.net/11336/172479
identifier_str_mv Tonorezos, Emily S.; Friedman, Danielle Novetsky; Barnea, Dana; Bosscha, Machteld I.; Chantada, Guillermo Luis; et al.; Recommendations for Long-Term Follow-up of Adults with Heritable Retinoblastoma; Elsevier Science Inc.; Ophthalmology; 127; 11; 11-2020; 1549-1557
0161-6420
1549-4713
CONICET Digital
CONICET
dc.language.none.fl_str_mv eng
language eng
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info:eu-repo/semantics/altIdentifier/url/https://www.sciencedirect.com/science/article/abs/pii/S0161642020304620
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application/pdf
dc.publisher.none.fl_str_mv Elsevier Science Inc.
publisher.none.fl_str_mv Elsevier Science Inc.
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