Development of cancer surveillance guidelines in ataxia telangiectasia: A Delphi-based consensus survey of international experts

Ataxia telangiectasia; Cancer predisposition; International survey

Detalles Bibliográficos
Autores: Neves, Renata, De Dios Perez, Blanca, Panek, Rafal, Jagani, Sumit, Wilne, Sophie, BHATT, JAYESH MAHENDRA, Soler-Palacin, Pere
Tipo de recurso: artículo
Estado:Versión publicada
Fecha de publicación:2023
País:España
Institución:Departament de Salut de la Generalitat de Catalunya (DS)
Repositorio:Scientia. Dipòsit d'Informació Digital del Departament de Salut
OAI Identifier:oai:scientiasalut.gencat.cat:11351/10272
Acceso en línea:https://hdl.handle.net/11351/10272
Access Level:acceso abierto
Palabra clave:Càncer - Propensió
Decisió de grup
Atàxia
DISEASES::Nervous System Diseases::Central Nervous System Diseases::Brain Diseases::Cerebellar Diseases::Cerebellar Ataxia::Spinocerebellar Ataxias::Ataxia Telangiectasia
DISEASES::Neoplasms
INFORMATION SCIENCE::Information Science::Systems Analysis::Delphi Technique
ENFERMEDADES::enfermedades del sistema nervioso::enfermedades del sistema nervioso central::enfermedades cerebrales::enfermedades cerebelosas::ataxia cerebelosa::ataxias espinocerebelosas::ataxia telangiectasia
ENFERMEDADES::neoplasias
CIENCIA DE LA INFORMACIÓN::Ciencias de la información::análisis de sistemas::técnica Delfos
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network_acronym_str ES
network_name_str España
repository_id_str
dc.title.none.fl_str_mv Development of cancer surveillance guidelines in ataxia telangiectasia: A Delphi-based consensus survey of international experts
title Development of cancer surveillance guidelines in ataxia telangiectasia: A Delphi-based consensus survey of international experts
spellingShingle Development of cancer surveillance guidelines in ataxia telangiectasia: A Delphi-based consensus survey of international experts
Neves, Renata
Càncer - Propensió
Decisió de grup
Atàxia
DISEASES::Nervous System Diseases::Central Nervous System Diseases::Brain Diseases::Cerebellar Diseases::Cerebellar Ataxia::Spinocerebellar Ataxias::Ataxia Telangiectasia
DISEASES::Neoplasms
INFORMATION SCIENCE::Information Science::Systems Analysis::Delphi Technique
ENFERMEDADES::enfermedades del sistema nervioso::enfermedades del sistema nervioso central::enfermedades cerebrales::enfermedades cerebelosas::ataxia cerebelosa::ataxias espinocerebelosas::ataxia telangiectasia
ENFERMEDADES::neoplasias
CIENCIA DE LA INFORMACIÓN::Ciencias de la información::análisis de sistemas::técnica Delfos
title_short Development of cancer surveillance guidelines in ataxia telangiectasia: A Delphi-based consensus survey of international experts
title_full Development of cancer surveillance guidelines in ataxia telangiectasia: A Delphi-based consensus survey of international experts
title_fullStr Development of cancer surveillance guidelines in ataxia telangiectasia: A Delphi-based consensus survey of international experts
title_full_unstemmed Development of cancer surveillance guidelines in ataxia telangiectasia: A Delphi-based consensus survey of international experts
title_sort Development of cancer surveillance guidelines in ataxia telangiectasia: A Delphi-based consensus survey of international experts
dc.creator.none.fl_str_mv Neves, Renata
De Dios Perez, Blanca
Panek, Rafal
Jagani, Sumit
Wilne, Sophie
BHATT, JAYESH MAHENDRA
Soler-Palacin, Pere
author Neves, Renata
author_facet Neves, Renata
De Dios Perez, Blanca
Panek, Rafal
Jagani, Sumit
Wilne, Sophie
BHATT, JAYESH MAHENDRA
Soler-Palacin, Pere
author_role author
author2 De Dios Perez, Blanca
Panek, Rafal
Jagani, Sumit
Wilne, Sophie
BHATT, JAYESH MAHENDRA
Soler-Palacin, Pere
author2_role author
author
author
author
author
author
dc.contributor.none.fl_str_mv Institut Català de la Salut
[Neves R] Radiological Sciences, School of Medicine, University of Nottingham, Nottingham, UK. Department of Radiology, Nottingham University Hospitals NHS Trust, Nottingham, UK. [De Dios Perez B] Centre for Rehabilitation and Ageing Research, School of Medicine, University of Nottingham, Nottingham, UK. [Panek R] Medical Physics & Clinical Engineering, Nottingham University Hospitals NHS Trust, Nottingham, UK. [Jagani S] Department of Radiology, Nottingham University Hospitals NHS Trust, Nottingham, UK. [Wilne S] Department of Paediatric Oncology, Nottingham University Hospitals NHS Trust, Nottingham, UK. [Bhatt JM] Nottingham Children's Hospital, Nottingham University Hospitals NHS Trust, Nottingham, UK. UK National Paediatric Ataxia Telangiectasia Clinic, Nottingham University Hospitals NHS Trust, Nottingham, UK. [Soler-Palacin P] Unitat de Patologia Infecciosa i Immunodeficiències de Pediatria, Vall d’Hebron Hospital Universitari, Barcelona, Spain. Jeffrey Modell Diagnostic and Research Center for Primary Immunodeficiencies, Barcelona, Spain. Universitat Autònoma de Barcelona, Bellaterra, Spain
Vall d'Hebron Barcelona Hospital Campus
dc.subject.none.fl_str_mv Càncer - Propensió
Decisió de grup
Atàxia
DISEASES::Nervous System Diseases::Central Nervous System Diseases::Brain Diseases::Cerebellar Diseases::Cerebellar Ataxia::Spinocerebellar Ataxias::Ataxia Telangiectasia
DISEASES::Neoplasms
INFORMATION SCIENCE::Information Science::Systems Analysis::Delphi Technique
ENFERMEDADES::enfermedades del sistema nervioso::enfermedades del sistema nervioso central::enfermedades cerebrales::enfermedades cerebelosas::ataxia cerebelosa::ataxias espinocerebelosas::ataxia telangiectasia
ENFERMEDADES::neoplasias
CIENCIA DE LA INFORMACIÓN::Ciencias de la información::análisis de sistemas::técnica Delfos
topic Càncer - Propensió
Decisió de grup
Atàxia
DISEASES::Nervous System Diseases::Central Nervous System Diseases::Brain Diseases::Cerebellar Diseases::Cerebellar Ataxia::Spinocerebellar Ataxias::Ataxia Telangiectasia
DISEASES::Neoplasms
INFORMATION SCIENCE::Information Science::Systems Analysis::Delphi Technique
ENFERMEDADES::enfermedades del sistema nervioso::enfermedades del sistema nervioso central::enfermedades cerebrales::enfermedades cerebelosas::ataxia cerebelosa::ataxias espinocerebelosas::ataxia telangiectasia
ENFERMEDADES::neoplasias
CIENCIA DE LA INFORMACIÓN::Ciencias de la información::análisis de sistemas::técnica Delfos
description Ataxia telangiectasia; Cancer predisposition; International survey
publishDate 2023
dc.date.none.fl_str_mv 2023
2023
2023
dc.type.none.fl_str_mv info:eu-repo/semantics/article
info:eu-repo/semantics/publishedVersion
format article
status_str publishedVersion
dc.identifier.none.fl_str_mv https://hdl.handle.net/11351/10272
url https://hdl.handle.net/11351/10272
dc.language.none.fl_str_mv Inglés
language_invalid_str_mv Inglés
dc.relation.none.fl_str_mv Cancer Medicine;12(13)
https://doi.org/10.1002/cam4.6075
dc.rights.none.fl_str_mv Attribution 4.0 International
http://creativecommons.org/licenses/by/4.0/
info:eu-repo/semantics/openAccess
rights_invalid_str_mv Attribution 4.0 International
http://creativecommons.org/licenses/by/4.0/
eu_rights_str_mv openAccess
dc.format.none.fl_str_mv application/pdf
application/pdf
dc.publisher.none.fl_str_mv Wiley
publisher.none.fl_str_mv Wiley
dc.source.none.fl_str_mv Scientia
reponame:Scientia. Dipòsit d'Informació Digital del Departament de Salut
instname:Departament de Salut de la Generalitat de Catalunya (DS)
instname_str Departament de Salut de la Generalitat de Catalunya (DS)
reponame_str Scientia. Dipòsit d'Informació Digital del Departament de Salut
collection Scientia. Dipòsit d'Informació Digital del Departament de Salut
repository.name.fl_str_mv
repository.mail.fl_str_mv
_version_ 1869402527433228288
spelling Development of cancer surveillance guidelines in ataxia telangiectasia: A Delphi-based consensus survey of international expertsNeves, RenataDe Dios Perez, BlancaPanek, RafalJagani, SumitWilne, SophieBHATT, JAYESH MAHENDRASoler-Palacin, PereCàncer - PropensióDecisió de grupAtàxiaDISEASES::Nervous System Diseases::Central Nervous System Diseases::Brain Diseases::Cerebellar Diseases::Cerebellar Ataxia::Spinocerebellar Ataxias::Ataxia TelangiectasiaDISEASES::NeoplasmsINFORMATION SCIENCE::Information Science::Systems Analysis::Delphi TechniqueENFERMEDADES::enfermedades del sistema nervioso::enfermedades del sistema nervioso central::enfermedades cerebrales::enfermedades cerebelosas::ataxia cerebelosa::ataxias espinocerebelosas::ataxia telangiectasiaENFERMEDADES::neoplasiasCIENCIA DE LA INFORMACIÓN::Ciencias de la información::análisis de sistemas::técnica DelfosAtaxia telangiectasia; Cancer predisposition; International surveyAtàxia telangiectàsia; Predisposició al càncer; Enquesta internacionalAtaxia telangiectasia; Predisposición al cáncer; Encuesta internacionalBackground/Objectives Ataxia telangiectasia (A-T) is a multiorgan disorder with increased vulnerability to cancer. Despite this increased cancer risk, there are no widely accepted guidelines for cancer surveillance in people affected by A-T. We aimed to understand the current international practice regarding cancer surveillance in A-T and agreed-upon approaches to develop cancer surveillance in A-T. Design/Methods We used a consensus development method, the e-Delphi technique, comprising three rounds. Round 1 consisted of a Delphi questionnaire and a survey that collected the details of respondents' professional background, experience, and current practice of cancer surveillance in A-T. Rounds 2 and 3 were designed based on previous rounds and modified according to the comments made by the panellists. The pre-specified consensus threshold was ≥75% agreement. Results Thirty-five expert panellists from 13 countries completed the study. The survey indicated that the current practice of cancer surveillance varies widely between experts and centres'. Consensus was reached that evidence-based guidelines are needed for cancer surveillance in people with A-T, with separate recommendations for adults and children. Statements relating to the tests that should be included, the age for starting and stopping cancer surveillance and the optimal surveillance interval were also agreed upon, although in some areas, the consensus was that further research is needed. Conclusion The international expert consensus statement confirms the need for evidence-based cancer surveillance guidelines in A-T, highlights key features that the guidelines should include, and identifies areas of uncertainty in the expert community. This elucidates current knowledge gaps and will inform the design of future clinical trials.This study is funded by a grant from Action for A-T (ref. 20NOT05). Renata Neves is supported by a Doctoral Fellowship awarded by the College of Radiographers (ref. DF021). This study is supported by the National Institute for Health Research (NIHR) Applied Research Collaboration East Midlands (ARC EM). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.WileyInstitut Català de la Salut[Neves R] Radiological Sciences, School of Medicine, University of Nottingham, Nottingham, UK. Department of Radiology, Nottingham University Hospitals NHS Trust, Nottingham, UK. [De Dios Perez B] Centre for Rehabilitation and Ageing Research, School of Medicine, University of Nottingham, Nottingham, UK. [Panek R] Medical Physics & Clinical Engineering, Nottingham University Hospitals NHS Trust, Nottingham, UK. [Jagani S] Department of Radiology, Nottingham University Hospitals NHS Trust, Nottingham, UK. [Wilne S] Department of Paediatric Oncology, Nottingham University Hospitals NHS Trust, Nottingham, UK. [Bhatt JM] Nottingham Children's Hospital, Nottingham University Hospitals NHS Trust, Nottingham, UK. UK National Paediatric Ataxia Telangiectasia Clinic, Nottingham University Hospitals NHS Trust, Nottingham, UK. [Soler-Palacin P] Unitat de Patologia Infecciosa i Immunodeficiències de Pediatria, Vall d’Hebron Hospital Universitari, Barcelona, Spain. Jeffrey Modell Diagnostic and Research Center for Primary Immunodeficiencies, Barcelona, Spain. Universitat Autònoma de Barcelona, Bellaterra, SpainVall d'Hebron Barcelona Hospital Campus202320232023info:eu-repo/semantics/articleinfo:eu-repo/semantics/publishedVersionapplication/pdfapplication/pdfhttps://hdl.handle.net/11351/10272Scientiareponame:Scientia. Dipòsit d'Informació Digital del Departament de Salutinstname:Departament de Salut de la Generalitat de Catalunya (DS)InglésCancer Medicine;12(13)https://doi.org/10.1002/cam4.6075Attribution 4.0 Internationalhttp://creativecommons.org/licenses/by/4.0/info:eu-repo/semantics/openAccessoai:scientiasalut.gencat.cat:11351/102722026-06-12T09:38:37Z
score 15.812429

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