Developing and validating a clinical prediction model to predict epilepsy-related emergency department attendance, hospital admission, or death: A cohort study protocol
This retrospective open cohort study develops and externally validates a clinical prediction model (CPM) to predict the joint risk of two important outcomes occurring within the next year in people with epilepsy (PWE). These are: A) seizure-related emergency department or hospital admission; and B)...
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| Vydáno v: | PloS one Ročník 20; číslo 11; s. e0328809 |
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| Jazyk: | angličtina |
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Public Library of Science
10.11.2025
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| Abstract | This retrospective open cohort study develops and externally validates a clinical prediction model (CPM) to predict the joint risk of two important outcomes occurring within the next year in people with epilepsy (PWE). These are: A) seizure-related emergency department or hospital admission; and B) epilepsy-related death. This will provide clinicians with a tool to predict either or both of these common outcomes. This has not previously been done despite both being potentially avoidable, interrelated, and devastating for patients and their families. We hypothesise that the CPM will identify individuals at high or low risk of either or both outcomes. We will guide clinicians on proposed actions to take based on the overall risk score.
Routinely collected, anonymised, electronic health data from the following research platforms will be used: i) Clinical Practice Research Datalink (CPRD); ii) Secure Anonymised Information Linkage databank (SAIL); iii) Combined Intelligence for Population Health Action (CIPHA); and iv) TriNetX. We will study PWE aged ≥16 years having outcomes A and/or B between 2010-2024 within these datasets. Sample sizes of over 100,000 PWE are expected across these datasets. Candidate predictors will include demographic, lifestyle, clinical, and management variables. Logistic regression and multistate modelling will be used to develop a suitable CPM. The choice of modelling approach will be informed by consultation with clinicians and members of the public. We will assess the model's predictive performance using CPRD as a development dataset, and conduct external validation using SAIL, CIPHA, and TriNetX.
This large study will develop and validate a CPM for PWE, creating an internationally generalisable tool for subsequent clinical implementation. It will predict the joint risk of acute admission and death in PWE. Mortality prediction is highlighted by NICE as a key recommendation for epilepsy research. The study has been co-developed by epilepsy researchers and members of the public affected by epilepsy. |
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| AbstractList | This retrospective open cohort study develops and externally validates a clinical prediction model (CPM) to predict the joint risk of two important outcomes occurring within the next year in people with epilepsy (PWE). These are: A) seizure-related emergency department or hospital admission; and B) epilepsy-related death. This will provide clinicians with a tool to predict either or both of these common outcomes. This has not previously been done despite both being potentially avoidable, interrelated, and devastating for patients and their families. We hypothesise that the CPM will identify individuals at high or low risk of either or both outcomes. We will guide clinicians on proposed actions to take based on the overall risk score.INTRODUCTIONThis retrospective open cohort study develops and externally validates a clinical prediction model (CPM) to predict the joint risk of two important outcomes occurring within the next year in people with epilepsy (PWE). These are: A) seizure-related emergency department or hospital admission; and B) epilepsy-related death. This will provide clinicians with a tool to predict either or both of these common outcomes. This has not previously been done despite both being potentially avoidable, interrelated, and devastating for patients and their families. We hypothesise that the CPM will identify individuals at high or low risk of either or both outcomes. We will guide clinicians on proposed actions to take based on the overall risk score.Routinely collected, anonymised, electronic health data from the following research platforms will be used: i) Clinical Practice Research Datalink (CPRD); ii) Secure Anonymised Information Linkage databank (SAIL); iii) Combined Intelligence for Population Health Action (CIPHA); and iv) TriNetX. We will study PWE aged ≥16 years having outcomes A and/or B between 2010-2024 within these datasets. Sample sizes of over 100,000 PWE are expected across these datasets. Candidate predictors will include demographic, lifestyle, clinical, and management variables. Logistic regression and multistate modelling will be used to develop a suitable CPM. The choice of modelling approach will be informed by consultation with clinicians and members of the public. We will assess the model's predictive performance using CPRD as a development dataset, and conduct external validation using SAIL, CIPHA, and TriNetX.METHODS AND ANALYSISRoutinely collected, anonymised, electronic health data from the following research platforms will be used: i) Clinical Practice Research Datalink (CPRD); ii) Secure Anonymised Information Linkage databank (SAIL); iii) Combined Intelligence for Population Health Action (CIPHA); and iv) TriNetX. We will study PWE aged ≥16 years having outcomes A and/or B between 2010-2024 within these datasets. Sample sizes of over 100,000 PWE are expected across these datasets. Candidate predictors will include demographic, lifestyle, clinical, and management variables. Logistic regression and multistate modelling will be used to develop a suitable CPM. The choice of modelling approach will be informed by consultation with clinicians and members of the public. We will assess the model's predictive performance using CPRD as a development dataset, and conduct external validation using SAIL, CIPHA, and TriNetX.This large study will develop and validate a CPM for PWE, creating an internationally generalisable tool for subsequent clinical implementation. It will predict the joint risk of acute admission and death in PWE. Mortality prediction is highlighted by NICE as a key recommendation for epilepsy research. The study has been co-developed by epilepsy researchers and members of the public affected by epilepsy.CONCLUSIONSThis large study will develop and validate a CPM for PWE, creating an internationally generalisable tool for subsequent clinical implementation. It will predict the joint risk of acute admission and death in PWE. Mortality prediction is highlighted by NICE as a key recommendation for epilepsy research. The study has been co-developed by epilepsy researchers and members of the public affected by epilepsy. This retrospective open cohort study develops and externally validates a clinical prediction model (CPM) to predict the joint risk of two important outcomes occurring within the next year in people with epilepsy (PWE). These are: A) seizure-related emergency department or hospital admission; and B) epilepsy-related death. This will provide clinicians with a tool to predict either or both of these common outcomes. This has not previously been done despite both being potentially avoidable, interrelated, and devastating for patients and their families. We hypothesise that the CPM will identify individuals at high or low risk of either or both outcomes. We will guide clinicians on proposed actions to take based on the overall risk score. Routinely collected, anonymised, electronic health data from the following research platforms will be used: i) Clinical Practice Research Datalink (CPRD); ii) Secure Anonymised Information Linkage databank (SAIL); iii) Combined Intelligence for Population Health Action (CIPHA); and iv) TriNetX. We will study PWE aged ≥16 years having outcomes A and/or B between 2010-2024 within these datasets. Sample sizes of over 100,000 PWE are expected across these datasets. Candidate predictors will include demographic, lifestyle, clinical, and management variables. Logistic regression and multistate modelling will be used to develop a suitable CPM. The choice of modelling approach will be informed by consultation with clinicians and members of the public. We will assess the model's predictive performance using CPRD as a development dataset, and conduct external validation using SAIL, CIPHA, and TriNetX. This large study will develop and validate a CPM for PWE, creating an internationally generalisable tool for subsequent clinical implementation. It will predict the joint risk of acute admission and death in PWE. Mortality prediction is highlighted by NICE as a key recommendation for epilepsy research. The study has been co-developed by epilepsy researchers and members of the public affected by epilepsy. This retrospective open cohort study develops and externally validates a clinical prediction model (CPM) to predict the joint risk of two important outcomes occurring within the next year in people with epilepsy (PWE). These are: A) seizure-related emergency department or hospital admission; and B) epilepsy-related death. This will provide clinicians with a tool to predict either or both of these common outcomes. This has not previously been done despite both being potentially avoidable, interrelated, and devastating for patients and their families. We hypothesise that the CPM will identify individuals at high or low risk of either or both outcomes. We will guide clinicians on proposed actions to take based on the overall risk score. Routinely collected, anonymised, electronic health data from the following research platforms will be used: i) Clinical Practice Research Datalink (CPRD); ii) Secure Anonymised Information Linkage databank (SAIL); iii) Combined Intelligence for Population Health Action (CIPHA); and iv) TriNetX. We will study PWE aged [greater than or equal to]16 years having outcomes A and/or B between 2010-2024 within these datasets. Sample sizes of over 100,000 PWE are expected across these datasets. Candidate predictors will include demographic, lifestyle, clinical, and management variables. Logistic regression and multistate modelling will be used to develop a suitable CPM. The choice of modelling approach will be informed by consultation with clinicians and members of the public. We will assess the model's predictive performance using CPRD as a development dataset, and conduct external validation using SAIL, CIPHA, and TriNetX. This large study will develop and validate a CPM for PWE, creating an internationally generalisable tool for subsequent clinical implementation. It will predict the joint risk of acute admission and death in PWE. Mortality prediction is highlighted by NICE as a key recommendation for epilepsy research. The study has been co-developed by epilepsy researchers and members of the public affected by epilepsy. Introduction This retrospective open cohort study develops and externally validates a clinical prediction model (CPM) to predict the joint risk of two important outcomes occurring within the next year in people with epilepsy (PWE). These are: A) seizure-related emergency department or hospital admission; and B) epilepsy-related death. This will provide clinicians with a tool to predict either or both of these common outcomes. This has not previously been done despite both being potentially avoidable, interrelated, and devastating for patients and their families. We hypothesise that the CPM will identify individuals at high or low risk of either or both outcomes. We will guide clinicians on proposed actions to take based on the overall risk score. Methods and analysis Routinely collected, anonymised, electronic health data from the following research platforms will be used: i) Clinical Practice Research Datalink (CPRD); ii) Secure Anonymised Information Linkage databank (SAIL); iii) Combined Intelligence for Population Health Action (CIPHA); and iv) TriNetX. We will study PWE aged [greater than or equal to]16 years having outcomes A and/or B between 2010-2024 within these datasets. Sample sizes of over 100,000 PWE are expected across these datasets. Candidate predictors will include demographic, lifestyle, clinical, and management variables. Logistic regression and multistate modelling will be used to develop a suitable CPM. The choice of modelling approach will be informed by consultation with clinicians and members of the public. We will assess the model's predictive performance using CPRD as a development dataset, and conduct external validation using SAIL, CIPHA, and TriNetX. Conclusions This large study will develop and validate a CPM for PWE, creating an internationally generalisable tool for subsequent clinical implementation. It will predict the joint risk of acute admission and death in PWE. Mortality prediction is highlighted by NICE as a key recommendation for epilepsy research. The study has been co-developed by epilepsy researchers and members of the public affected by epilepsy. |
| Audience | Academic |
| Author | Marson, Anthony G. Griffiths, Alan Garret, Hilary Pickrell, W Owen Lip, Gregory Y.H. Schofield, Pieta Mbizvo, Gashirai K. Buchan, Iain Bonnett, Laura J. Martin, Glen P. |
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| Cites_doi | 10.1111/epi.16928 10.1212/WNL.0000000000002253 10.1016/j.eplepsyres.2019.106192 10.1017/S1463423609990211 10.1136/bmjopen-2024-086589 10.1378/chest.09-1584 10.1503/cmaj.190757 10.1212/WNL.0000000000013068 10.1111/epi.17065 10.1002/sim.8787 10.1136/bmjopen-2018-023352 10.1016/j.seizure.2021.11.003 10.1371/journal.pmed.1001381 10.1002/(SICI)1097-0258(19970228)16:4<385::AID-SIM380>3.0.CO;2-3 10.1016/j.cpcardiol.2023.101868 10.1136/bmjopen-2014-007325 10.1136/bmj.g7594 10.1186/s41512-020-00090-3 10.1016/S2215-0366(22)00260-7 10.1016/j.seizure.2021.11.007 10.1136/bmjopen-2021-052841 10.1136/bmjopen-2019-031696 10.1093/eurheartj/ehr488 10.1016/j.seizure.2020.02.012 10.1016/j.eplepsyres.2020.106462 10.1016/j.lanepe.2021.100107 10.1111/epi.16547 10.1136/bmjopen-2013-003482 10.1016/j.seizure.2021.11.017 10.1093/brain/awac463 10.1111/j.2517-6161.1996.tb02080.x |
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| Title | Developing and validating a clinical prediction model to predict epilepsy-related emergency department attendance, hospital admission, or death: A cohort study protocol |
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