Intensity of human prion disease surveillance predicts observed disease incidence
Identifieur interne : 001542 ( Istex/Curation ); précédent : 001541; suivant : 001543Intensity of human prion disease surveillance predicts observed disease incidence
Auteurs : Genevieve M J A. Klug [Australie] ; Handan Wand [Australie] ; Marion Simpson [Australie] ; Alison Boyd [Australie] ; Matthew Law [Australie] ; Colin L. Masters [Australie] ; Radoslav Mat J [République tchèque] ; Rachel Howley [Irlande (pays)] ; Michael Farrell [Irlande (pays)] ; Maren Breithaupt [Allemagne] ; Inga Zerr [Allemagne] ; Cornelia Van Duijn [Pays-Bas] ; Carla Ibrahim-Verbaas [Pays-Bas] ; Jan Mackenzie [Royaume-Uni] ; Robert G. Will [Royaume-Uni] ; Jean-Philippe Brandel [France] ; Annick Alperovitch [France] ; Herbert Budka [Autriche] ; Gabor G. Kovacs [Autriche, Hongrie] ; Gerard H. Jansen [Canada] ; Michael Coulthard [Canada] ; Steven J. Collins [Australie]Source :
- Journal of Neurology, Neurosurgery & Psychiatry [ 0022-3050 ] ; 2013-12.
Descripteurs français
- Wicri :
- topic : Santé publique, Garde à vue.
English descriptors
- KwdEn :
- Annual number, Australian commonwealth department, Austrian reference center, Breast cancer, Centre, Cochrane database syst, Colorectal cancer, Consequent impact, Czech, Czech republic, Disease incidence, Disease monitoring, Disease occurrence, Disease registry, Draft preparation, Generous support, Gmja, Human prion disease, Human prion diseases, Iatrogenic prion disease, Incidence, Incidence rate ratios, Incidence rates, Kirby institute, Klug, Klug gmja, National context, National crude, National data, National reference laboratory, National registries, National screening, National surveillance, National surveillance centre, National surveillance centres, National surveillance units, Negative association, Neurol, Neurol neurosurg psychiatry, Neurol neurosurg psychiatry neurodegeneration, Neuropathological, Neuropathological assessment, Neuropathological examination, Neuropathological examinations, Neuropathology, Neurosurg, Numerical predominance, Objective determination, Objective measures, Other countries, Outcome variables, Policy research programme, Population interrogation rates, Population rates, Population sizes, Predictive relationship, Predictor, Predictor variables, Prion, Prion disease, Prion disease cases, Prion disease groups, Prion disease incidence, Prion disease referrals, Prion disease registry, Prion diseases, Prion diseases program, Probable cases, Professor steven, Programme, Protein detection, Protein detection referrals, Protein testing, Public health, Public health agency, Rare disorders, Referral, Referrals neuropathology, Sporadic, Sporadic disease, Study period, Study timeframe, Surveillance, Surveillance centres, Surveillance intensity, Surveillance methods, Surveillance network, Surveillance programmes, Surveillance unit, Survey year, Test referrals.
- Teeft :
- Annual number, Australian commonwealth department, Austrian reference center, Breast cancer, Centre, Cochrane database syst, Colorectal cancer, Consequent impact, Czech, Czech republic, Disease incidence, Disease monitoring, Disease occurrence, Disease registry, Draft preparation, Generous support, Gmja, Human prion disease, Human prion diseases, Iatrogenic prion disease, Incidence, Incidence rate ratios, Incidence rates, Kirby institute, Klug, Klug gmja, National context, National crude, National data, National reference laboratory, National registries, National screening, National surveillance, National surveillance centre, National surveillance centres, National surveillance units, Negative association, Neurol, Neurol neurosurg psychiatry, Neurol neurosurg psychiatry neurodegeneration, Neuropathological, Neuropathological assessment, Neuropathological examination, Neuropathological examinations, Neuropathology, Neurosurg, Numerical predominance, Objective determination, Objective measures, Other countries, Outcome variables, Policy research programme, Population interrogation rates, Population rates, Population sizes, Predictive relationship, Predictor, Predictor variables, Prion, Prion disease, Prion disease cases, Prion disease groups, Prion disease incidence, Prion disease referrals, Prion disease registry, Prion diseases, Prion diseases program, Probable cases, Professor steven, Programme, Protein detection, Protein detection referrals, Protein testing, Public health, Public health agency, Rare disorders, Referral, Referrals neuropathology, Sporadic, Sporadic disease, Study period, Study timeframe, Surveillance, Surveillance centres, Surveillance intensity, Surveillance methods, Surveillance network, Surveillance programmes, Surveillance unit, Survey year, Test referrals.
Abstract
Background Prospective national screening and surveillance programmes serve a range of public health functions. Objectively determining their adequacy and impact on disease may be problematic for rare disorders. We undertook to assess whether objective measures of disease surveillance intensity could be developed for the rare disorder sporadic Creutzfeldt–Jakob disease (CJD) and whether such measures correlate with disease incidence. Method From 10 countries with national human prion disease surveillance centres, the annual number of suspected prion disease cases notified to each national unit (n=17 610), referrals for cerebrospinal fluid (CSF) 14-3-3 protein diagnostic testing (n=28 780) and the number of suspect cases undergoing diagnostic neuropathological examination (n=4885) from 1993 to 2006 were collected. Age and survey year adjusted incidence rate ratios with 95% CIs were estimated using Poisson regression models to assess risk factors for sporadic, non-sporadic and all prion disease cases. Results Age and survey year adjusted analysis showed all three surveillance intensity measures (suspected human prion disease notifications, 14-3-3 protein diagnostic test referrals and neuropathological examinations of suspect cases) significantly predicted the incidence of sporadic CJD, non-sporadic CJD and all prion disease. Conclusions Routine national surveillance methods adjusted as population rates allow objective determination of surveillance intensity, which correlates positively with reported incidence for human prion disease, especially sporadic CJD, largely independent of national context. The predictive relationship between surveillance intensity and disease incidence should facilitate more rapid delineation of aberrations in disease occurrence and assessment of the adequacy of disease monitoring by national registries.
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DOI: 10.1136/jnnp-2012-304820
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Masters</name><affiliation wicri:level="1"><mods:affiliation>Australian National Creuztfeldt-Jakob Disease Registry, Department of Pathology, The University of Melbourne, Parkville, Australia</mods:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Australian National Creuztfeldt-Jakob Disease Registry, Department of Pathology, The University of Melbourne, Parkville</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>The Mental Health Research Institute of Victoria, The University of Melbourne, Parkville, Australia</mods:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>The Mental Health Research Institute of Victoria, The University of Melbourne, Parkville</wicri:regionArea></affiliation></author><author><name sortKey="Mat J, Radoslav" sort="Mat J, Radoslav" uniqKey="Mat J R" first="Radoslav" last="Mat J">Radoslav Mat J</name><affiliation wicri:level="1"><mods:affiliation>National Reference Laboratory for Diagnostics of Human Prion Diseases, Thomayer Teaching Hospital, Prague, Czech Republic</mods:affiliation><country xml:lang="fr">République tchèque</country><wicri:regionArea>National Reference Laboratory for Diagnostics of Human Prion Diseases, Thomayer Teaching Hospital, Prague</wicri:regionArea></affiliation></author><author><name sortKey="Howley, Rachel" sort="Howley, Rachel" uniqKey="Howley R" first="Rachel" last="Howley">Rachel Howley</name><affiliation wicri:level="1"><mods:affiliation>CJD Surveillance Unit, Department of Neuropathology, Beaumont Hospital, Dublin, Ireland</mods:affiliation><country xml:lang="fr">Irlande (pays)</country><wicri:regionArea>CJD Surveillance Unit, Department of Neuropathology, Beaumont Hospital, Dublin</wicri:regionArea></affiliation></author><author><name sortKey="Farrell, Michael" sort="Farrell, Michael" uniqKey="Farrell M" first="Michael" last="Farrell">Michael Farrell</name><affiliation wicri:level="1"><mods:affiliation>CJD Surveillance Unit, Department of Neuropathology, Beaumont Hospital, Dublin, Ireland</mods:affiliation><country xml:lang="fr">Irlande (pays)</country><wicri:regionArea>CJD Surveillance Unit, Department of Neuropathology, Beaumont Hospital, Dublin</wicri:regionArea></affiliation></author><author><name sortKey="Breithaupt, Maren" sort="Breithaupt, Maren" uniqKey="Breithaupt M" first="Maren" last="Breithaupt">Maren Breithaupt</name><affiliation wicri:level="1"><mods:affiliation>Dementia Research Unit, Department of Neurology, National Reference Center for TSE, Georg-August University, Göttingen, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Dementia Research Unit, Department of Neurology, National Reference Center for TSE, Georg-August University, Göttingen</wicri:regionArea></affiliation></author><author><name sortKey="Zerr, Inga" sort="Zerr, Inga" uniqKey="Zerr I" first="Inga" last="Zerr">Inga Zerr</name><affiliation wicri:level="1"><mods:affiliation>Dementia Research Unit, Department of Neurology, National Reference Center for TSE, Georg-August University, Göttingen, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Dementia Research Unit, Department of Neurology, National Reference Center for TSE, Georg-August University, Göttingen</wicri:regionArea></affiliation></author><author><name sortKey="Van Duijn, Cornelia" sort="Van Duijn, Cornelia" uniqKey="Van Duijn C" first="Cornelia" last="Van Duijn">Cornelia Van Duijn</name><affiliation wicri:level="1"><mods:affiliation>Dutch National Prion Disease Registry, Department of Epidemiology, Erasmus University Medical Center, Rotterdam, The Netherlands</mods:affiliation><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Dutch National Prion Disease Registry, Department of Epidemiology, Erasmus University Medical Center, Rotterdam</wicri:regionArea></affiliation></author><author><name sortKey="Ibrahim Verbaas, Carla" sort="Ibrahim Verbaas, Carla" uniqKey="Ibrahim Verbaas C" first="Carla" last="Ibrahim-Verbaas">Carla Ibrahim-Verbaas</name><affiliation wicri:level="1"><mods:affiliation>Dutch National Prion Disease Registry, Department of Epidemiology, Erasmus University Medical Center, Rotterdam, The Netherlands</mods:affiliation><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Dutch National Prion Disease Registry, Department of Epidemiology, Erasmus University Medical Center, Rotterdam</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, Erasmus MC University Medical Centre, Rotterdam, The Netherlands</mods:affiliation><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Department of Neurology, Erasmus MC University Medical Centre, Rotterdam</wicri:regionArea></affiliation></author><author><name sortKey="Mackenzie, Jan" sort="Mackenzie, Jan" uniqKey="Mackenzie J" first="Jan" last="Mackenzie">Jan Mackenzie</name><affiliation wicri:level="1"><mods:affiliation>National Creutzfeldt-Jakob Disease Research and Surveillance Unit, Western General Hospital, The University of Edinburgh, Edinburgh, UK</mods:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>National Creutzfeldt-Jakob Disease Research and Surveillance Unit, Western General Hospital, The University of Edinburgh, Edinburgh</wicri:regionArea></affiliation></author><author><name sortKey="Will, Robert G" sort="Will, Robert G" uniqKey="Will R" first="Robert G" last="Will">Robert G. Will</name><affiliation wicri:level="1"><mods:affiliation>National Creutzfeldt-Jakob Disease Research and Surveillance Unit, Western General Hospital, The University of Edinburgh, Edinburgh, UK</mods:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>National Creutzfeldt-Jakob Disease Research and Surveillance Unit, Western General Hospital, The University of Edinburgh, Edinburgh</wicri:regionArea></affiliation></author><author><name sortKey="Brandel, Jean Philippe" sort="Brandel, Jean Philippe" uniqKey="Brandel J" first="Jean-Philippe" last="Brandel">Jean-Philippe Brandel</name><affiliation wicri:level="1"><mods:affiliation>Cellule Nationale de référence des maladies de Creutzfeldt-Jakob, Groupe Hospitalier Pitié-Salpêtrière, Paris, Cedex, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Cellule Nationale de référence des maladies de Creutzfeldt-Jakob, Groupe Hospitalier Pitié-Salpêtrière, Paris, Cedex</wicri:regionArea></affiliation></author><author><name sortKey="Alperovitch, Annick" sort="Alperovitch, Annick" uniqKey="Alperovitch A" first="Annick" last="Alperovitch">Annick Alperovitch</name><affiliation wicri:level="1"><mods:affiliation>Cellule Nationale de référence des maladies de Creutzfeldt-Jakob, Groupe Hospitalier Pitié-Salpêtrière, Paris, Cedex, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Cellule Nationale de référence des maladies de Creutzfeldt-Jakob, Groupe Hospitalier Pitié-Salpêtrière, Paris, Cedex</wicri:regionArea></affiliation></author><author><name sortKey="Budka, Herbert" sort="Budka, Herbert" uniqKey="Budka H" first="Herbert" last="Budka">Herbert Budka</name><affiliation wicri:level="1"><mods:affiliation>Institute of Neurology, Medical University of Vienna and Austrian Reference Center for Human Prion diseases, Vienna, Austria</mods:affiliation><country xml:lang="fr">Autriche</country><wicri:regionArea>Institute of Neurology, Medical University of Vienna and Austrian Reference Center for Human Prion diseases, Vienna</wicri:regionArea></affiliation></author><author><name sortKey="Kovacs, Gabor G" sort="Kovacs, Gabor G" uniqKey="Kovacs G" first="Gabor G" last="Kovacs">Gabor G. Kovacs</name><affiliation wicri:level="1"><mods:affiliation>Institute of Neurology, Medical University of Vienna and Austrian Reference Center for Human Prion diseases, Vienna, Austria</mods:affiliation><country xml:lang="fr">Autriche</country><wicri:regionArea>Institute of Neurology, Medical University of Vienna and Austrian Reference Center for Human Prion diseases, Vienna</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>Semmelweis University Neuropathology and Prion Disease Reference Center, Budapest, Hungary</mods:affiliation><country xml:lang="fr">Hongrie</country><wicri:regionArea>Semmelweis University Neuropathology and Prion Disease Reference Center, Budapest</wicri:regionArea></affiliation></author><author><name sortKey="Jansen, Gerard H" sort="Jansen, Gerard H" uniqKey="Jansen G" first="Gerard H" last="Jansen">Gerard H. Jansen</name><affiliation wicri:level="1"><mods:affiliation>Department of Pathology and Laboratory Medicine, University of Ottawa, Ottawa, Ontario, Canada</mods:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Department of Pathology and Laboratory Medicine, University of Ottawa, Ottawa, Ontario</wicri:regionArea></affiliation></author><author><name sortKey="Coulthard, Michael" sort="Coulthard, Michael" uniqKey="Coulthard M" first="Michael" last="Coulthard">Michael Coulthard</name><affiliation wicri:level="1"><mods:affiliation>Canadian CJD Surveillance System and Prion Diseases Program, Public Health Agency of Canada, Winnipeg, Canada</mods:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Canadian CJD Surveillance System and Prion Diseases Program, Public Health Agency of Canada, Winnipeg</wicri:regionArea></affiliation></author><author><name sortKey="Collins, Steven J" sort="Collins, Steven J" uniqKey="Collins S" first="Steven J" last="Collins">Steven J. Collins</name><affiliation wicri:level="1"><mods:affiliation>Australian National Creuztfeldt-Jakob Disease Registry, Department of Pathology, The University of Melbourne, Parkville, Australia</mods:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Australian National Creuztfeldt-Jakob Disease Registry, Department of Pathology, The University of Melbourne, Parkville</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>The Mental Health Research Institute of Victoria, The University of Melbourne, Parkville, Australia</mods:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>The Mental Health Research Institute of Victoria, The University of Melbourne, Parkville</wicri:regionArea></affiliation></author></titleStmt><publicationStmt><idno type="wicri:source">ISTEX</idno><idno type="RBID">ISTEX:72132177C19358AE38955BC0D8FF7DA99580FBC2</idno><date when="2013" year="2013">2013</date><idno type="doi">10.1136/jnnp-2012-304820</idno><idno type="url">https://api.istex.fr/document/72132177C19358AE38955BC0D8FF7DA99580FBC2/fulltext/pdf</idno><idno type="wicri:Area/Istex/Corpus">001542</idno><idno type="wicri:explorRef" wicri:stream="Istex" wicri:step="Corpus" wicri:corpus="ISTEX">001542</idno><idno type="wicri:Area/Istex/Curation">001542</idno></publicationStmt><sourceDesc><biblStruct><analytic><title level="a">Intensity of human prion disease surveillance predicts observed disease incidence</title><author><name sortKey="Klug, Genevieve M J A" sort="Klug, Genevieve M J A" uniqKey="Klug G" first="Genevieve M J A" last="Klug">Genevieve M J A. Klug</name><affiliation wicri:level="1"><mods:affiliation>Australian National Creuztfeldt-Jakob Disease Registry, Department of Pathology, The University of Melbourne, Parkville, Australia</mods:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Australian National Creuztfeldt-Jakob Disease Registry, Department of Pathology, The University of Melbourne, Parkville</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>The Mental Health Research Institute of Victoria, The University of Melbourne, Parkville, Australia</mods:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>The Mental Health Research Institute of Victoria, The University of Melbourne, Parkville</wicri:regionArea></affiliation></author><author><name sortKey="Wand, Handan" sort="Wand, Handan" uniqKey="Wand H" first="Handan" last="Wand">Handan Wand</name><affiliation wicri:level="1"><mods:affiliation>The Kirby Institute (formerly National Centre in HIV Epidemiology and Clinical Research), University of New South Wales, Coogee, Australia</mods:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>The Kirby Institute (formerly National Centre in HIV Epidemiology and Clinical Research), University of New South Wales, Coogee</wicri:regionArea></affiliation></author><author><name sortKey="Simpson, Marion" sort="Simpson, Marion" uniqKey="Simpson M" first="Marion" last="Simpson">Marion Simpson</name><affiliation wicri:level="1"><mods:affiliation>Australian National Creuztfeldt-Jakob Disease Registry, Department of Pathology, The University of Melbourne, Parkville, Australia</mods:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Australian National Creuztfeldt-Jakob Disease Registry, Department of Pathology, The University of Melbourne, Parkville</wicri:regionArea></affiliation></author><author><name sortKey="Boyd, Alison" sort="Boyd, Alison" uniqKey="Boyd A" first="Alison" last="Boyd">Alison Boyd</name><affiliation wicri:level="1"><mods:affiliation>Australian National Creuztfeldt-Jakob Disease Registry, Department of Pathology, The University of Melbourne, Parkville, Australia</mods:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Australian National Creuztfeldt-Jakob Disease Registry, Department of Pathology, The University of Melbourne, Parkville</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>The Mental Health Research Institute of Victoria, The University of Melbourne, Parkville, Australia</mods:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>The Mental Health Research Institute of Victoria, The University of Melbourne, Parkville</wicri:regionArea></affiliation></author><author><name sortKey="Law, Matthew" sort="Law, Matthew" uniqKey="Law M" first="Matthew" last="Law">Matthew Law</name><affiliation wicri:level="1"><mods:affiliation>The Kirby Institute (formerly National Centre in HIV Epidemiology and Clinical Research), University of New South Wales, Coogee, Australia</mods:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>The Kirby Institute (formerly National Centre in HIV Epidemiology and Clinical Research), University of New South Wales, Coogee</wicri:regionArea></affiliation></author><author><name sortKey="Masters, Colin L" sort="Masters, Colin L" uniqKey="Masters C" first="Colin L" last="Masters">Colin L. Masters</name><affiliation wicri:level="1"><mods:affiliation>Australian National Creuztfeldt-Jakob Disease Registry, Department of Pathology, The University of Melbourne, Parkville, Australia</mods:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Australian National Creuztfeldt-Jakob Disease Registry, Department of Pathology, The University of Melbourne, Parkville</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>The Mental Health Research Institute of Victoria, The University of Melbourne, Parkville, Australia</mods:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>The Mental Health Research Institute of Victoria, The University of Melbourne, Parkville</wicri:regionArea></affiliation></author><author><name sortKey="Mat J, Radoslav" sort="Mat J, Radoslav" uniqKey="Mat J R" first="Radoslav" last="Mat J">Radoslav Mat J</name><affiliation wicri:level="1"><mods:affiliation>National Reference Laboratory for Diagnostics of Human Prion Diseases, Thomayer Teaching Hospital, Prague, Czech Republic</mods:affiliation><country xml:lang="fr">République tchèque</country><wicri:regionArea>National Reference Laboratory for Diagnostics of Human Prion Diseases, Thomayer Teaching Hospital, Prague</wicri:regionArea></affiliation></author><author><name sortKey="Howley, Rachel" sort="Howley, Rachel" uniqKey="Howley R" first="Rachel" last="Howley">Rachel Howley</name><affiliation wicri:level="1"><mods:affiliation>CJD Surveillance Unit, Department of Neuropathology, Beaumont Hospital, Dublin, Ireland</mods:affiliation><country xml:lang="fr">Irlande (pays)</country><wicri:regionArea>CJD Surveillance Unit, Department of Neuropathology, Beaumont Hospital, Dublin</wicri:regionArea></affiliation></author><author><name sortKey="Farrell, Michael" sort="Farrell, Michael" uniqKey="Farrell M" first="Michael" last="Farrell">Michael Farrell</name><affiliation wicri:level="1"><mods:affiliation>CJD Surveillance Unit, Department of Neuropathology, Beaumont Hospital, Dublin, Ireland</mods:affiliation><country xml:lang="fr">Irlande (pays)</country><wicri:regionArea>CJD Surveillance Unit, Department of Neuropathology, Beaumont Hospital, Dublin</wicri:regionArea></affiliation></author><author><name sortKey="Breithaupt, Maren" sort="Breithaupt, Maren" uniqKey="Breithaupt M" first="Maren" last="Breithaupt">Maren Breithaupt</name><affiliation wicri:level="1"><mods:affiliation>Dementia Research Unit, Department of Neurology, National Reference Center for TSE, Georg-August University, Göttingen, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Dementia Research Unit, Department of Neurology, National Reference Center for TSE, Georg-August University, Göttingen</wicri:regionArea></affiliation></author><author><name sortKey="Zerr, Inga" sort="Zerr, Inga" uniqKey="Zerr I" first="Inga" last="Zerr">Inga Zerr</name><affiliation wicri:level="1"><mods:affiliation>Dementia Research Unit, Department of Neurology, National Reference Center for TSE, Georg-August University, Göttingen, Germany</mods:affiliation><country xml:lang="fr">Allemagne</country><wicri:regionArea>Dementia Research Unit, Department of Neurology, National Reference Center for TSE, Georg-August University, Göttingen</wicri:regionArea></affiliation></author><author><name sortKey="Van Duijn, Cornelia" sort="Van Duijn, Cornelia" uniqKey="Van Duijn C" first="Cornelia" last="Van Duijn">Cornelia Van Duijn</name><affiliation wicri:level="1"><mods:affiliation>Dutch National Prion Disease Registry, Department of Epidemiology, Erasmus University Medical Center, Rotterdam, The Netherlands</mods:affiliation><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Dutch National Prion Disease Registry, Department of Epidemiology, Erasmus University Medical Center, Rotterdam</wicri:regionArea></affiliation></author><author><name sortKey="Ibrahim Verbaas, Carla" sort="Ibrahim Verbaas, Carla" uniqKey="Ibrahim Verbaas C" first="Carla" last="Ibrahim-Verbaas">Carla Ibrahim-Verbaas</name><affiliation wicri:level="1"><mods:affiliation>Dutch National Prion Disease Registry, Department of Epidemiology, Erasmus University Medical Center, Rotterdam, The Netherlands</mods:affiliation><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Dutch National Prion Disease Registry, Department of Epidemiology, Erasmus University Medical Center, Rotterdam</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>Department of Neurology, Erasmus MC University Medical Centre, Rotterdam, The Netherlands</mods:affiliation><country xml:lang="fr">Pays-Bas</country><wicri:regionArea>Department of Neurology, Erasmus MC University Medical Centre, Rotterdam</wicri:regionArea></affiliation></author><author><name sortKey="Mackenzie, Jan" sort="Mackenzie, Jan" uniqKey="Mackenzie J" first="Jan" last="Mackenzie">Jan Mackenzie</name><affiliation wicri:level="1"><mods:affiliation>National Creutzfeldt-Jakob Disease Research and Surveillance Unit, Western General Hospital, The University of Edinburgh, Edinburgh, UK</mods:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>National Creutzfeldt-Jakob Disease Research and Surveillance Unit, Western General Hospital, The University of Edinburgh, Edinburgh</wicri:regionArea></affiliation></author><author><name sortKey="Will, Robert G" sort="Will, Robert G" uniqKey="Will R" first="Robert G" last="Will">Robert G. Will</name><affiliation wicri:level="1"><mods:affiliation>National Creutzfeldt-Jakob Disease Research and Surveillance Unit, Western General Hospital, The University of Edinburgh, Edinburgh, UK</mods:affiliation><country xml:lang="fr">Royaume-Uni</country><wicri:regionArea>National Creutzfeldt-Jakob Disease Research and Surveillance Unit, Western General Hospital, The University of Edinburgh, Edinburgh</wicri:regionArea></affiliation></author><author><name sortKey="Brandel, Jean Philippe" sort="Brandel, Jean Philippe" uniqKey="Brandel J" first="Jean-Philippe" last="Brandel">Jean-Philippe Brandel</name><affiliation wicri:level="1"><mods:affiliation>Cellule Nationale de référence des maladies de Creutzfeldt-Jakob, Groupe Hospitalier Pitié-Salpêtrière, Paris, Cedex, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Cellule Nationale de référence des maladies de Creutzfeldt-Jakob, Groupe Hospitalier Pitié-Salpêtrière, Paris, Cedex</wicri:regionArea></affiliation></author><author><name sortKey="Alperovitch, Annick" sort="Alperovitch, Annick" uniqKey="Alperovitch A" first="Annick" last="Alperovitch">Annick Alperovitch</name><affiliation wicri:level="1"><mods:affiliation>Cellule Nationale de référence des maladies de Creutzfeldt-Jakob, Groupe Hospitalier Pitié-Salpêtrière, Paris, Cedex, France</mods:affiliation><country xml:lang="fr">France</country><wicri:regionArea>Cellule Nationale de référence des maladies de Creutzfeldt-Jakob, Groupe Hospitalier Pitié-Salpêtrière, Paris, Cedex</wicri:regionArea></affiliation></author><author><name sortKey="Budka, Herbert" sort="Budka, Herbert" uniqKey="Budka H" first="Herbert" last="Budka">Herbert Budka</name><affiliation wicri:level="1"><mods:affiliation>Institute of Neurology, Medical University of Vienna and Austrian Reference Center for Human Prion diseases, Vienna, Austria</mods:affiliation><country xml:lang="fr">Autriche</country><wicri:regionArea>Institute of Neurology, Medical University of Vienna and Austrian Reference Center for Human Prion diseases, Vienna</wicri:regionArea></affiliation></author><author><name sortKey="Kovacs, Gabor G" sort="Kovacs, Gabor G" uniqKey="Kovacs G" first="Gabor G" last="Kovacs">Gabor G. Kovacs</name><affiliation wicri:level="1"><mods:affiliation>Institute of Neurology, Medical University of Vienna and Austrian Reference Center for Human Prion diseases, Vienna, Austria</mods:affiliation><country xml:lang="fr">Autriche</country><wicri:regionArea>Institute of Neurology, Medical University of Vienna and Austrian Reference Center for Human Prion diseases, Vienna</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>Semmelweis University Neuropathology and Prion Disease Reference Center, Budapest, Hungary</mods:affiliation><country xml:lang="fr">Hongrie</country><wicri:regionArea>Semmelweis University Neuropathology and Prion Disease Reference Center, Budapest</wicri:regionArea></affiliation></author><author><name sortKey="Jansen, Gerard H" sort="Jansen, Gerard H" uniqKey="Jansen G" first="Gerard H" last="Jansen">Gerard H. Jansen</name><affiliation wicri:level="1"><mods:affiliation>Department of Pathology and Laboratory Medicine, University of Ottawa, Ottawa, Ontario, Canada</mods:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Department of Pathology and Laboratory Medicine, University of Ottawa, Ottawa, Ontario</wicri:regionArea></affiliation></author><author><name sortKey="Coulthard, Michael" sort="Coulthard, Michael" uniqKey="Coulthard M" first="Michael" last="Coulthard">Michael Coulthard</name><affiliation wicri:level="1"><mods:affiliation>Canadian CJD Surveillance System and Prion Diseases Program, Public Health Agency of Canada, Winnipeg, Canada</mods:affiliation><country xml:lang="fr">Canada</country><wicri:regionArea>Canadian CJD Surveillance System and Prion Diseases Program, Public Health Agency of Canada, Winnipeg</wicri:regionArea></affiliation></author><author><name sortKey="Collins, Steven J" sort="Collins, Steven J" uniqKey="Collins S" first="Steven J" last="Collins">Steven J. Collins</name><affiliation wicri:level="1"><mods:affiliation>Australian National Creuztfeldt-Jakob Disease Registry, Department of Pathology, The University of Melbourne, Parkville, Australia</mods:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>Australian National Creuztfeldt-Jakob Disease Registry, Department of Pathology, The University of Melbourne, Parkville</wicri:regionArea></affiliation><affiliation wicri:level="1"><mods:affiliation>The Mental Health Research Institute of Victoria, The University of Melbourne, Parkville, Australia</mods:affiliation><country xml:lang="fr">Australie</country><wicri:regionArea>The Mental Health Research Institute of Victoria, The University of Melbourne, Parkville</wicri:regionArea></affiliation></author></analytic><monogr></monogr><series><title level="j">Journal of Neurology, Neurosurgery & Psychiatry</title><title level="j" type="abbrev">J Neurol Neurosurg Psychiatry</title><idno type="ISSN">0022-3050</idno><idno type="eISSN">1468-330X</idno><imprint><publisher>BMJ Publishing Group Ltd</publisher><date type="published" when="2013-12">2013-12</date><biblScope unit="volume">84</biblScope><biblScope unit="issue">12</biblScope><biblScope unit="page" from="1372">1372</biblScope></imprint><idno type="ISSN">0022-3050</idno></series></biblStruct></sourceDesc><seriesStmt><idno type="ISSN">0022-3050</idno></seriesStmt></fileDesc><profileDesc><textClass><keywords scheme="KwdEn" xml:lang="en"><term>Annual number</term><term>Australian commonwealth department</term><term>Austrian reference center</term><term>Breast cancer</term><term>Centre</term><term>Cochrane database syst</term><term>Colorectal cancer</term><term>Consequent impact</term><term>Czech</term><term>Czech republic</term><term>Disease incidence</term><term>Disease monitoring</term><term>Disease occurrence</term><term>Disease registry</term><term>Draft preparation</term><term>Generous support</term><term>Gmja</term><term>Human prion disease</term><term>Human prion diseases</term><term>Iatrogenic prion disease</term><term>Incidence</term><term>Incidence rate ratios</term><term>Incidence rates</term><term>Kirby institute</term><term>Klug</term><term>Klug gmja</term><term>National context</term><term>National crude</term><term>National data</term><term>National reference laboratory</term><term>National registries</term><term>National screening</term><term>National surveillance</term><term>National surveillance centre</term><term>National surveillance centres</term><term>National surveillance units</term><term>Negative association</term><term>Neurol</term><term>Neurol neurosurg psychiatry</term><term>Neurol neurosurg psychiatry neurodegeneration</term><term>Neuropathological</term><term>Neuropathological assessment</term><term>Neuropathological examination</term><term>Neuropathological examinations</term><term>Neuropathology</term><term>Neurosurg</term><term>Numerical predominance</term><term>Objective determination</term><term>Objective measures</term><term>Other countries</term><term>Outcome variables</term><term>Policy research programme</term><term>Population interrogation rates</term><term>Population rates</term><term>Population sizes</term><term>Predictive relationship</term><term>Predictor</term><term>Predictor variables</term><term>Prion</term><term>Prion disease</term><term>Prion disease cases</term><term>Prion disease groups</term><term>Prion disease incidence</term><term>Prion disease referrals</term><term>Prion disease registry</term><term>Prion diseases</term><term>Prion diseases program</term><term>Probable cases</term><term>Professor steven</term><term>Programme</term><term>Protein detection</term><term>Protein detection referrals</term><term>Protein testing</term><term>Public health</term><term>Public health agency</term><term>Rare disorders</term><term>Referral</term><term>Referrals neuropathology</term><term>Sporadic</term><term>Sporadic disease</term><term>Study period</term><term>Study timeframe</term><term>Surveillance</term><term>Surveillance centres</term><term>Surveillance intensity</term><term>Surveillance methods</term><term>Surveillance network</term><term>Surveillance programmes</term><term>Surveillance unit</term><term>Survey year</term><term>Test referrals</term></keywords><keywords scheme="Teeft" xml:lang="en"><term>Annual number</term><term>Australian commonwealth department</term><term>Austrian reference center</term><term>Breast cancer</term><term>Centre</term><term>Cochrane database syst</term><term>Colorectal cancer</term><term>Consequent impact</term><term>Czech</term><term>Czech republic</term><term>Disease incidence</term><term>Disease monitoring</term><term>Disease occurrence</term><term>Disease registry</term><term>Draft preparation</term><term>Generous support</term><term>Gmja</term><term>Human prion disease</term><term>Human prion diseases</term><term>Iatrogenic prion disease</term><term>Incidence</term><term>Incidence rate ratios</term><term>Incidence rates</term><term>Kirby institute</term><term>Klug</term><term>Klug gmja</term><term>National context</term><term>National crude</term><term>National data</term><term>National reference laboratory</term><term>National registries</term><term>National screening</term><term>National surveillance</term><term>National surveillance centre</term><term>National surveillance centres</term><term>National surveillance units</term><term>Negative association</term><term>Neurol</term><term>Neurol neurosurg psychiatry</term><term>Neurol neurosurg psychiatry neurodegeneration</term><term>Neuropathological</term><term>Neuropathological assessment</term><term>Neuropathological examination</term><term>Neuropathological examinations</term><term>Neuropathology</term><term>Neurosurg</term><term>Numerical predominance</term><term>Objective determination</term><term>Objective measures</term><term>Other countries</term><term>Outcome variables</term><term>Policy research programme</term><term>Population interrogation rates</term><term>Population rates</term><term>Population sizes</term><term>Predictive relationship</term><term>Predictor</term><term>Predictor variables</term><term>Prion</term><term>Prion disease</term><term>Prion disease cases</term><term>Prion disease groups</term><term>Prion disease incidence</term><term>Prion disease referrals</term><term>Prion disease registry</term><term>Prion diseases</term><term>Prion diseases program</term><term>Probable cases</term><term>Professor steven</term><term>Programme</term><term>Protein detection</term><term>Protein detection referrals</term><term>Protein testing</term><term>Public health</term><term>Public health agency</term><term>Rare disorders</term><term>Referral</term><term>Referrals neuropathology</term><term>Sporadic</term><term>Sporadic disease</term><term>Study period</term><term>Study timeframe</term><term>Surveillance</term><term>Surveillance centres</term><term>Surveillance intensity</term><term>Surveillance methods</term><term>Surveillance network</term><term>Surveillance programmes</term><term>Surveillance unit</term><term>Survey year</term><term>Test referrals</term></keywords><keywords scheme="Wicri" type="topic" xml:lang="fr"><term>Santé publique</term><term>Garde à vue</term></keywords></textClass><langUsage><language ident="en">en</language></langUsage></profileDesc></teiHeader><front><div type="abstract">Background Prospective national screening and surveillance programmes serve a range of public health functions. Objectively determining their adequacy and impact on disease may be problematic for rare disorders. We undertook to assess whether objective measures of disease surveillance intensity could be developed for the rare disorder sporadic Creutzfeldt–Jakob disease (CJD) and whether such measures correlate with disease incidence. Method From 10 countries with national human prion disease surveillance centres, the annual number of suspected prion disease cases notified to each national unit (n=17 610), referrals for cerebrospinal fluid (CSF) 14-3-3 protein diagnostic testing (n=28 780) and the number of suspect cases undergoing diagnostic neuropathological examination (n=4885) from 1993 to 2006 were collected. Age and survey year adjusted incidence rate ratios with 95% CIs were estimated using Poisson regression models to assess risk factors for sporadic, non-sporadic and all prion disease cases. Results Age and survey year adjusted analysis showed all three surveillance intensity measures (suspected human prion disease notifications, 14-3-3 protein diagnostic test referrals and neuropathological examinations of suspect cases) significantly predicted the incidence of sporadic CJD, non-sporadic CJD and all prion disease. Conclusions Routine national surveillance methods adjusted as population rates allow objective determination of surveillance intensity, which correlates positively with reported incidence for human prion disease, especially sporadic CJD, largely independent of national context. The predictive relationship between surveillance intensity and disease incidence should facilitate more rapid delineation of aberrations in disease occurrence and assessment of the adequacy of disease monitoring by national registries.</div></front></TEI></record>Pour manipuler ce document sous Unix (Dilib)
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