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Exploring the preva...
Exploring the prevalence and profile of epilepsy across Europe using a standard retrospective chart review : Challenges and opportunities
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- Linehan, Christine (författare)
- UCD Centre for Disability Studies, University College Dublin, Dublin, Ireland
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- Benson, Ailbhe (författare)
- UCD Centre for Disability Studies, University College Dublin, Dublin, Ireland
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- Gunko, Alex (författare)
- UCD Centre for Disability Studies, University College Dublin, Dublin, Ireland
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- Christensen, Jakob (författare)
- Department of Neurology, Aarhus University Hospital, Aarhus, Denmark
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- Sun, Yuelian (författare)
- Department of Neurology, Aarhus University Hospital, Aarhus, Denmark; Department of Clinical Epidemiology, Aarhus University Hospital, Aarhus, Denmark; National Center for Register-Based Research, Department of Economics and Business Economics, Business, and Social Science, Aarhus University, Aarhus, Denmark
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- Tomson, Torbjorn (författare)
- Karolinska Institutet
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- Marson, Anthony (författare)
- Institute of Translational Medicine, University of Liverpool, Liverpool, United Kingdom
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- Forsgren, Lars (författare)
- Umeå universitet,Neurovetenskaper
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- Trinka, Eugen (författare)
- Department of Neurology, Christian Doppler Clinic, Paracelsus Medical University and Center for Cognitive Neuroscience, Salzburg, Austria; EpiCARE European Reference Network, Salzburg, Austria; Neuroscience Institute, Christian Doppler University Hospital, Paracelsus Medical University, Salzburg, Austria; Department of Public Health, Health Services Research, and Health Technology Assessment, University for Health Sciences, Medical Informatics, and Technology, Hall in Tirol, Austria
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- Iliescu, Catrinel (författare)
- Clinical Neurosciences Department, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania; Pediatric Neurology Department, Expertise Center for Rare Diseases in Pediatric Neurology, Prof Dr Alexandru Obregia Clinical Hospital, Bucharest, Romania; EpiCARE European Reference Network, Bucharest, Romania
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- Althoehn Sonderup, Julie (författare)
- Department of Neurology, Aarhus University Hospital, Aarhus, Denmark
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- Werenberg Dreier, Julie (författare)
- National Center for Register-Based Research, Department of Economics and Business Economics, Business, and Social Science, Aarhus University, Aarhus, Denmark
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- Sandu, Carmen (författare)
- Clinical Neurosciences Department, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania
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- Leanca, Madalina (författare)
- Clinical Neurosciences Department, Carol Davila University of Medicine and Pharmacy, Bucharest, Romania
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- Rainer, Lucas (författare)
- Department of Neurology, Christian Doppler Clinic, Paracelsus Medical University and Center for Cognitive Neuroscience, Salzburg, Austria
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- Kobulashvili, Teia (författare)
- Department of Neurology, Christian Doppler Clinic, Paracelsus Medical University and Center for Cognitive Neuroscience, Salzburg, Austria
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- Granbichler, Claudia A. (författare)
- Department of Neurology, Christian Doppler Clinic, Paracelsus Medical University and Center for Cognitive Neuroscience, Salzburg, Austria; Department of Neurology, Chaim Sheba Medical Center, Ramat Gan, Israel; Sacker Faculty of Medicine, Tel Aviv University, Tel Aviv, Israel
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- Delanty, Norman (författare)
- Beaumont Hospital, Dublin, Ireland; School of Pharmacy and Biomolecular Sciences, Royal College of Surgeons in Ireland, Ireland
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- Doherty, Colin (författare)
- FutureNeuro Research Centre for Rare and Chronic Diseases, Royal College of Surgeons in Ireland, Dublin, Ireland; Academic Unit of Neurology, Trinity College Dublin, Dublin, Ireland
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- Staines, Anthony (författare)
- School of Nursing, Psychotherapy, and Community Health, Dublin City University, Dublin, Ireland
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- Shahwan, Amre (författare)
- Temple Street Children's University Hospital, Dublin, Ireland
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(creator_code:org_t)
- 2021-09-02
- 2021
- Engelska.
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Ingår i: Epilepsia. - : John Wiley & Sons. - 0013-9580 .- 1528-1167. ; 62:11, s. 2651-2666
- Relaterad länk:
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https://doi.org/10.1...
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https://umu.diva-por... (primary) (Raw object)
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https://onlinelibrar...
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https://urn.kb.se/re...
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https://doi.org/10.1...
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http://kipublication...
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Abstract
Ämnesord
Stäng
- Objective: This study aimed to determine the prevalence of epilepsy in four European countries (Austria, Denmark, Ireland, and Romania) employing a standard methodology. The study was conducted under the auspices of ESBACE (European Study on the Burden and Care of Epilepsy).Methods: All hospitals and general practitioners serving a region of at least 50 000 persons in each country were asked to identify patients living in the region who had a diagnosis of epilepsy or experienced a single unprovoked seizure. Medical records were accessed, where available, to complete a standardized case report form. Data were sought on seizure frequency, seizure type, investigations, etiology, comorbidities, and use of antiseizure medication. Cases were validated in each country, and the degree of certainty was graded as definite, probable, or suspect cases.Results: From a total population of 237 757 in the four countries, 1988 (.8%) patients were identified as potential cases of epilepsy. Due to legal and ethical issues in the individual countries, medical records were available for only 1208 patients, and among these, 113 had insufficient clinical information. The remaining 1095 cases were classified as either definite (n = 706, 64.5%), probable (n = 191, 17.4%), suspect (n = 153, 14.0%), or not epilepsy (n = 45, 4.1%).Significance: Although a precise prevalence estimate could not be generated from these data, the study found a high validity of epilepsy classification among evaluated cases (95.9%). More generally, this study highlights the significant challenges facing epidemiological research methodologies that are reliant on patient consent and retrospective chart review, largely due to the introduction of data protection legislation during the study period. Documentation of the epilepsy diagnosis was, in some cases, relatively low, indicating a need for improved guidelines for assessment, follow-up, and documentation. This study highlights the need to address the concerns and requirements of recruitment sites to engage in epidemiological research.
Ämnesord
- MEDICIN OCH HÄLSOVETENSKAP -- Klinisk medicin -- Neurologi (hsv//swe)
- MEDICAL AND HEALTH SCIENCES -- Clinical Medicine -- Neurology (hsv//eng)
Nyckelord
- burden of disease
- data protection
- epidemiology
- GDPR
- general data protection regulation
- medical records
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- ref (ämneskategori)
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- Av författaren/redakt...
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Linehan, Christi ...
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Benson, Ailbhe
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Gunko, Alex
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Christensen, Jak ...
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Sun, Yuelian
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Tomson, Torbjorn
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Marson, Anthony
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Forsgren, Lars
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Trinka, Eugen
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Iliescu, Catrine ...
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Althoehn Sonderu ...
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Werenberg Dreier ...
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Sandu, Carmen
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Leanca, Madalina
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Rainer, Lucas
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Kobulashvili, Te ...
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Granbichler, Cla ...
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Delanty, Norman
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Doherty, Colin
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Staines, Anthony
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Shahwan, Amre
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- Om ämnet
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- MEDICIN OCH HÄLSOVETENSKAP
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MEDICIN OCH HÄLS ...
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och Klinisk medicin
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och Neurologi
- Artiklar i publikationen
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Epilepsia
- Av lärosätet
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Umeå universitet
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Karolinska Institutet