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
.jpg)
- Institución
- Consejo Nacional de Investigaciones Científicas y Técnicas
- OAI Identificador
- oai:ri.conicet.gov.ar:11336/172479
Ver los metadatos del registro completo
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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 |
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info:eu-repo/semantics/article info:eu-repo/semantics/publishedVersion http://purl.org/coar/resource_type/c_6501 info:ar-repo/semantics/articulo |
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article |
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publishedVersion |
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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 |
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eng |
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eng |
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application/pdf application/pdf |
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Elsevier Science Inc. |
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Elsevier Science Inc. |
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dasensio@conicet.gov.ar; lcarlino@conicet.gov.ar |
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