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dc.contributor.authorRooney, JPK
dc.contributor.authorBrayne, C
dc.contributor.authorTobin, K
dc.contributor.authorLogroscino, G
dc.contributor.authorGlymour, MM
dc.contributor.authorHardiman, O
dc.date.accessioned2017-07-04T12:37:47Z
dc.date.available2017-07-04T12:37:47Z
dc.date.issued2017-06-13
dc.identifier.issn0028-3878
dc.identifier.urihttps://www.repository.cam.ac.uk/handle/1810/265151
dc.description.abstractPopulation-based disease registers identify and characterize all cases of disease, including those that might otherwise be neglected. Prospective population-based registers in neurodegeneration are necessary to provide comprehensive data on the whole phenotypic spectrum and can guide planning of health services. With the exception of the rare disease amyotrophic lateral sclerosis, few complete population-based registers exist for neurodegenerative conditions. Incomplete ascertainment, limitations and uncertainty in diagnostic categorization, and failure to recognize sources of bias reduce the accuracy and usefulness of many registers. Common biases include population stratification, the use of prevalent rather than incident cases in earlier years, changes in disease understanding and diagnostic criteria, and changing demographics over time. Future registers are at risk of funding shortfalls and changes to privacy legislation. Notwithstanding, as heterogeneities of clinical phenotype and disease pathogenesis are increasingly recognized in the neurodegenerations, well-designed longitudinal population-based disease registers will be an essential requirement to complete clinical understanding of neurodegenerative diseases.
dc.description.sponsorshipHealth Research Board (Ireland)
dc.languageeng
dc.language.isoen
dc.publisherWolters Kluwer
dc.subjecthumans
dc.subjectneurodegenerative diseases
dc.subjectregistries
dc.titleBenefits, pitfalls, and future design of population-based registers in neurodegenerative disease
dc.typeArticle
prism.endingPage2329
prism.issueIdentifier24
prism.publicationDate2017
prism.publicationNameNeurology
prism.startingPage2321
prism.volume88
dc.identifier.doi10.17863/CAM.11206
dcterms.dateAccepted2017-03-24
rioxxterms.versionofrecord10.1212/WNL.0000000000004038
rioxxterms.versionVoR
rioxxterms.licenseref.urihttp://www.rioxx.net/licenses/all-rights-reserved
rioxxterms.licenseref.startdate2017-06-13
dc.contributor.orcidBrayne, Carol [0000-0001-5307-663X]
dc.identifier.eissn1526-632X
rioxxterms.typeJournal Article/Review
cam.issuedOnline2017-05-17
cam.orpheus.successThu Jan 30 12:53:35 GMT 2020 - The item has an open VoR version.
rioxxterms.freetoread.startdate2100-01-01


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