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时间:2019-02-28
《Prevalence_of_rare_diseases_by_decreasing_prevalence_or_cases.pdf》由会员上传分享,免费在线阅读,更多相关内容在学术论文-天天文库。
1、PrevalencedistributionofrarediseasesOrphanetReportSeries200180160RareDiseasescollection14012010080Numberofdiseases60November2013November2009Number24020005101520253035404550Estimatedprevalence(/100000)Prevalenceofrarediseases:BibliographicdataListedinordero
2、fdecreasingprevalenceornumberofpublishedcaseswww.orpha.net20102206MethodologyAsystematicsurveyoftheliteratureisbeingUpdatedDataperformedinordertoprovideanestimateoftheNewinformationfromavailabledatasources:newprevalenceofrarediseasesinEurope.Anupdatedscien
3、tificpublications,greyliterature,expertreportwillbepublishedregularlyandwillreplaceopinion.thepreviousversion.ThisupdatecontainsnewepidemiologicaldataandmodificationstoexistingdataforwhichnewinformationhasbeenmadeLimitationofthestudyavailable.Theexactpreva
4、lencerateofeachrarediseaseisdifficulttoassessfromtheavailabledatasources.SearchstrategyThereisalowlevelofconsistencybetweenstudies,apoordocumentationofmethodsused,confusionThesearchstrategyiscarriedoutusingseveraldatabetweenincidenceandprevalence,and/orcon
5、fusionsources:betweenincidenceatbirthandlife-longincidence.-Websites:Orphanet,e-medicine,GeneClinics,EMAThevalidityofthepublishedstudiesistakenforandOMIM;grantedandnotassessed.Itislikelythatthere-Registres,RARECAREisanoverestimationformostdiseasesasthefew-
6、Medlineisconsultedusingthesearchalgorithm:publishedprevalencesurveysareusuallydoneinregionsofhigherprevalenceandareusuallybased«Diseasenames»ANDEpidemiology[MeSH:NoExp]onhospitaldata.Therefore,theseestimatesareanORIncidence[Title/abstract]ORPrevalence[Titl
7、e/indicationoftheassumedprevalencebutNovemberabstract]OREpidemiology[Title/abstract];notbeaccurate.-Medicalbooks,greyliteratureandreportsfromexpertsarealsoimportantsourcesofdata.CollecteddataPrevalencevaluesprovidedarethemeanofthehighestandlowestvaluescoll
8、ected.-Forcongenitaldiseaseswithbirth-onset,prevalence=birthprevalencex(patientlifeexpectancy/generalpopulationlifeexpectancy);-Fortheotherrarediseases,prevalence=incidencexrarediseasemeanduration;Whennopreva
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