Search results for "rare cancer"

showing 5 items of 35 documents

Soft tissue sarcoma in Italy: From epidemiological data to clinical networking to improve patient care and outcomes

2019

Sarcomas are rare malignant neoplasms that develop from mesenchymal cells and include a heterogeneous and large group of histological subtypes that may occur at any anatomical site. Soft tissue sarcomas (STS), the focus of this review, account for ≈70‒80% of sarcomas and represent <1% of all cancers. The heterogeneity of STS applies to both their topography and morphology, and 5-year survival can vary widely depending on disease stage and the complex interplay between anatomical site and histology for different STS subtypes. The rarity and heterogeneity of STS, together with other factors, such as the lack of clinical expertise often lead to difficulties and delays in making an accurate …

Registriemedicine.medical_specialtyCancer ResearchHistologyEpidemiologyCancer registrieSoft Tissue NeoplasmsDiseaseEuropean reference networkPatient careClinical expertise03 medical and health sciences0302 clinical medicineEpidemiologymedicinePrevalenceHumansCancer registriesRegistries030212 general & internal medicineStage (cooking)Intensive care medicineSoft tissue sarcomaReference centresbusiness.industrySoft tissue sarcomaCancer registries; Epidemiology; European reference network; Histology; Incidence; Italian rare cancer network; Prevalence; Reference centres; Regional variability; Soft tissue sarcoma; Epidemiology; Oncology; Cancer ResearchIncidenceReference centreCancerSarcomaRegional variabilitymedicine.diseaseItalyOncology030220 oncology & carcinogenesisItalian rare cancer networkPatient CarebusinessLarge groupHuman
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Rare Cancers Europe (RCE) methodological recommendations for clinical studies in rare cancers: A European consensus position paper

2015

While they account for one-fifth of new cancer cases, rare cancers are difficult to study. A higher than average degree of uncertainty should be accommodated for clinical as well as for population-based decision making. Rules of rational decision making in conditions of uncertainty should be rigorously followed and would need widely informative clinical trials. In principle, any piece of new evidence would need to be exploited in rare cancers. Methodologies to explicitly weigh and combine all the available evidence should be refined, and the Bayesian logic can be instrumental to this end. Likewise, Bayesian-design trials may help optimize the low number of patients liable to be enrolled in …

Research designPathologyData baseResearch methodologyElectronic medical recordDiseaseReviewProceduresTreatment responseClinical trials; Rare cancers; Research methodology; Clinical Studies as Topic; Humans; Neoplasms; Rare Diseases; Research Design; Hematology; OncologyClinical trialsNeoplasmsReimbursementPriority journaleducation.field_of_studyClinical Studies as TopicClinical studies as topicHematologyRare diseasesEuropeOncologyResearch designResearch DesignClinical decision makingHumanmedicine.medical_specialtyPractice guidelineCase findingPopulationHealth care qualityReviewsCancer researchClinical studyRare DiseasesSDG 3 - Good Health and Well-beingConceptual frameworkmedicineHumansRare cancersTumor markerIntensive care medicineeducationAntineoplastic activityFlexibility (engineering)Surrogate endpointbusiness.industryMethodologyRare cancerStudy designCancer survivalReimbursementClinical trialClinical trials; Rare cancers; Research methodology; Hematology; OncologyPatient informationClinical effectivenessPosition paperNeoplasmbusinessRare disease
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Adjuvant Imatinib in Patients with GIST Harboring Exon 9 KIT Mutations : Results from a Multi-institutional European Retrospective Study

2022

[Purpose] The effect of high-dose imatinib (800 mg/day) on survival in the adjuvant treatment of patients with resected KIT exon 9–mutated gastrointestinal stromal tumors (GIST) is not established. Here, the association of dose and other clinicopathologic variables with survival was evaluated in a large multi-institutional European cohort.

STRUCTURAL BASISEXPRESSIONOncologyCancer Researchmedicine.medical_specialtyGastrointestinal Stromal Tumors3122 CancersMedizinAntineoplastic Agentsexon 9Adjuvants ImmunologicInternal medicinemedicineHumansFAILURERetrospective StudiesRISKRECEPTORGiSTProportional hazards modelbusiness.industryGASTROINTESTINAL STROMAL TUMORSHazard ratioImatinibRetrospective cohort studyExonsAdjuvant treatmentConfidence intervalGENOTYPEProto-Oncogene Proteins c-kitOncologyChemotherapy AdjuvantMutationPropensity score matchingCohortImatinib MesylateNeoplasm Recurrence LocalTYROSINE KINASE INHIBITORbusinessRare cancers Radboud Institute for Health Sciences [Radboudumc 9]medicine.drugGIST
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Inter- and Intraobserver Variation in the Assessment of Preoperative Colostograms in Male Anorectal Malformations: An ARM-Net Consortium Survey

2020

Aim:Male patients with anorectal malformations (ARM) are classified according to presence and level of the recto-urinary fistula. This is traditionally established by a preoperative high-pressure distal colostogram that may be variably interpreted by different surgeons. The aim of this study was to evaluate the inter- and intraobserver variation in the assessment by pediatric surgeons of preoperative colostograms with respect to the level of the recto-urinary fistula. Materials and Methods:Sixteen pediatric surgeons from 14 European centers belonging to the ARM-Net Consortium twice scored 130 images of distal colostograms taken in sagittal projection at a median age of 66 days of life (rang…

diagnostic studymedicine.medical_specialtyFistulaanorectal malformationRare cancers Radboud Institute for Molecular Life Sciences [Radboudumc 9]030204 cardiovascular system & hematologyPediatricssurgery03 medical and health sciencesAll institutes and research themes of the Radboud University Medical Center0302 clinical medicineBOWEL FUNCTIONUrinary Fistula030225 pediatricsMANAGEMENTMedicineddc:610Intraobserver VariationOriginal Researchcolostogramanorectal malformation urinary fistula colostogram surgery ARM-net multirater agreement radiology diagnostic studybusiness.industryARM-netlcsh:RJ1-570Pediatric Surgeonlcsh:PediatricsFISTULAmedicine.diseaseradiologySagittal planeReconstructive and regenerative medicine Radboud Institute for Health Sciences [Radboudumc 10]multirater agreementReconstructive and regenerative medicine Radboud Institute for Molecular Life Sciences [Radboudumc 10]medicine.anatomical_structureHomogeneousPRESSURE DISTAL COLOSTOGRAMInterobserver VariationPediatrics Perinatology and Child HealthUPDATEurinary fistulaRadiologyanorectal malformation; ARM-net; colostogram; diagnostic study; multirater agreement; radiology; surgery; urinary fistulabusinessKappa
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Health-Related Quality of Life Issues Experienced by Thoracic and Breast Sarcoma Patients: A Rare and Understudied Group

2021

Thoracic and breast sarcomas constitute a rare subgroup within the sarcoma population. There is limited knowledge about their health-related quality of life (HRQoL) and a valid disease-specific HRQoL instrument is lacking. This qualitative study aimed to investigate the HRQoL issues experienced by a small group of thoracic and breast sarcoma patients. Semi-structured interviews with 19 thoracic and four breast sarcoma patients were conducted and thematically analysed. Physical issues mentioned by both groups were fatigue, sleep disturbances, pain, wound infections, and symptoms related to chemotherapy and radiotherapy. Tightness in the back and restrictions in performing tasks above arm hei…

medicine.medical_specialtychest sarcomaBreast SarcomaPopulationbreast sarcomaSocial issuesArticleRC0254Tumours of the digestive tract Radboud Institute for Health Sciences [Radboudumc 14]All institutes and research themes of the Radboud University Medical CenterSDG 3 - Good Health and Well-beingQuality of lifemedicinethoracic sarcomaSocial determinants of healtheducationeducation.field_of_studybusiness.industryRGeneral Medicinemedicine.diseaseMental healthhealth-related quality of lifeMoodpatient-reported outcomesPhysical therapyMedicineSarcomabusinessRare cancers Radboud Institute for Health Sciences [Radboudumc 9]Journal of Clinical Medicine
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