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dc.contributor.authorFerrari, A
dc.contributor.authorTrama, A
dc.contributor.authorDe Paoli, A
dc.contributor.authorBergeron, C
dc.contributor.authorMerks, JHM
dc.contributor.authorJenney, M
dc.contributor.authorOrbach, D
dc.contributor.authorChisholm, JC
dc.contributor.authorGallego, S
dc.contributor.authorGlosli, H
dc.contributor.authorDe Salvo, GL
dc.contributor.authorBotta, L
dc.contributor.authorGatta, G
dc.contributor.authorBisogno, G
dc.contributor.authorRARECAREnet Working Group
dc.date.accessioned2018-02-20T10:55:13Z
dc.date.issued2017-06
dc.identifier.citationPediatric blood & cancer, 2017, 64 (6)
dc.identifier.issn1545-5009
dc.identifier.urihttps://repository.icr.ac.uk/handle/internal/1361
dc.identifier.eissn1545-5017
dc.identifier.doi10.1002/pbc.26348
dc.description.abstractBackground Adolescents with cancer are enrolled in clinical trials at far lower rates than children. This report compares the number of adolescents (15-19-year-olds) and children (0-14-year-olds) enrolled in the protocols of the European pediatric Soft tissue sarcoma Study Group (EpSSG) with the number of cases expected to occur.Methods The observed-to-expected (O/E) ratio was detected in the EpSSG countries contributing most of the cases, that is, Italy, France, Spain, the Netherlands, United Kingdom, and Ireland. The observed cases included patients enrolled in any of the EpSSG protocols from October 2008 to October 2015, when all EpSSG protocols were open in these countries. The number of expected cases was calculated from the incidence rates estimated throughout the RARECAREnet database in the countries' population-based cancer registries.Results In the countries considered, 2,118 cases aged 0-19 years were enrolled in the EpSSG trials from 2008 to 2015: 82.8% were children and 17.2% were adolescents. The O/E ratio was 0.30 among patients 15-19 years old, as opposed to 0.64 for those 0-14 years old. The O/E ratio differed for the different subtypes: in adolescents, it was 0.64 and 0.18 for rhabdomyosarcoma (RMS) and non-rhabdomyosarcoma soft tissue sarcomas (NRSTS), respectively; in children, it was 0.77 and 0.50, respectively. The O/E ratios differed across the countries considered.Conclusions Adolescents were less well represented than children on the EpSSG protocols, with better enrolment for RMS than for NRSTS for all age groups.
dc.formatPrint-Electronic
dc.languageeng
dc.language.isoeng
dc.subjectRARECAREnet Working Group
dc.subjectHumans
dc.subjectRhabdomyosarcoma
dc.subjectRetrospective Studies
dc.subjectAge Factors
dc.subjectAdolescent
dc.subjectAdult
dc.subjectChild
dc.subjectChild, Preschool
dc.subjectInfant
dc.subjectInfant, Newborn
dc.subjectHealth Services Accessibility
dc.subjectEurope
dc.subjectFemale
dc.subjectMale
dc.subjectClinical Trials as Topic
dc.titleAccess to clinical trials for adolescents with soft tissue sarcomas: Enrollment in European pediatric Soft tissue sarcoma Study Group (EpSSG) protocols.
dc.typeJournal Article
dcterms.dateAccepted2016-10-12
rioxxterms.versionofrecord10.1002/pbc.26348
rioxxterms.licenseref.startdate2017-06
rioxxterms.typeJournal Article/Review
dc.relation.isPartOfPediatric blood & cancer
pubs.issue6
pubs.notesNot known
pubs.organisational-group/ICR
pubs.organisational-group/ICR/Primary Group
pubs.organisational-group/ICR/Primary Group/Royal Marsden Clinical Units
pubs.organisational-group/ICR
pubs.organisational-group/ICR/Primary Group
pubs.organisational-group/ICR/Primary Group/Royal Marsden Clinical Units
pubs.publication-statusPublished
pubs.volume64
pubs.embargo.termsNot known
dc.contributor.icrauthorMarsden,en


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