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Cohort profile: the eLIXIR Partnership—a maternity–child data linkage for life course research in South London, UK

PURPOSE: Linked maternity, neonatal and maternal mental health records were created to support research into the early life origins of physical and mental health, in mothers and children. The Early Life Cross Linkage in Research (eLIXIR) Partnership was developed in 2018, generating a repository of...

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Autores principales: Carson, Lauren E, Azmi, Borscha, Jewell, Amelia, Taylor, Clare L, Flynn, Angela, Gill, Carolyn, Broadbent, Matthew, Howard, Louise, Stewart, Robert, Poston, Lucilla
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7539583/
https://www.ncbi.nlm.nih.gov/pubmed/33028561
http://dx.doi.org/10.1136/bmjopen-2020-039583
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author Carson, Lauren E
Azmi, Borscha
Jewell, Amelia
Taylor, Clare L
Flynn, Angela
Gill, Carolyn
Broadbent, Matthew
Howard, Louise
Stewart, Robert
Poston, Lucilla
author_facet Carson, Lauren E
Azmi, Borscha
Jewell, Amelia
Taylor, Clare L
Flynn, Angela
Gill, Carolyn
Broadbent, Matthew
Howard, Louise
Stewart, Robert
Poston, Lucilla
author_sort Carson, Lauren E
collection PubMed
description PURPOSE: Linked maternity, neonatal and maternal mental health records were created to support research into the early life origins of physical and mental health, in mothers and children. The Early Life Cross Linkage in Research (eLIXIR) Partnership was developed in 2018, generating a repository of real-time, pseudonymised, structured data derived from the electronic health record systems of two acute and one Mental Health Care National Health Service (NHS) Provider in South London. We present early descriptive data for the linkage database and the robust data security and governance structures, and describe the intended expansion of the database from its original development. Additionally, we report details of the accompanying eLIXIR Research Tissue Bank of maternal and neonatal blood samples. PARTICIPANTS: Descriptive data were generated from the eLIXIR database from 1 October 2018 to 30 June 2019. Over 17 000 electronic patient records were included. FINDINGS TO DATE: 10 207 women accessed antenatal care from the 2 NHS maternity services, with 8405 deliveries (8772 infants). This diverse, inner-city maternity service population was born in over 170 countries with an ethnic profile of 46.1% white, 19.1% black, 7.0% Asian, 4.1% mixed and 4.1% other. Of the 10 207 women, 11.6% had a clinical record in mental health services with 3.0% being treated during their pregnancy. This first data extract included 947 infants treated in the neonatal intensive care unit, of whom 19.1% were postnatal transfers from external healthcare providers. FUTURE PLANS: Electronic health records provide potentially transformative information for life course research, integrating physical and mental health disorders and outcomes in routine clinical care. The eLIXIR database will grow by ~14 000 new maternity cases annually, in addition to providing child follow-up data. Additional datasets will supplement the current linkage from other local and national resources, including primary care and hospital inpatient data for mothers and their children.
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spelling pubmed-75395832020-10-19 Cohort profile: the eLIXIR Partnership—a maternity–child data linkage for life course research in South London, UK Carson, Lauren E Azmi, Borscha Jewell, Amelia Taylor, Clare L Flynn, Angela Gill, Carolyn Broadbent, Matthew Howard, Louise Stewart, Robert Poston, Lucilla BMJ Open Health Informatics PURPOSE: Linked maternity, neonatal and maternal mental health records were created to support research into the early life origins of physical and mental health, in mothers and children. The Early Life Cross Linkage in Research (eLIXIR) Partnership was developed in 2018, generating a repository of real-time, pseudonymised, structured data derived from the electronic health record systems of two acute and one Mental Health Care National Health Service (NHS) Provider in South London. We present early descriptive data for the linkage database and the robust data security and governance structures, and describe the intended expansion of the database from its original development. Additionally, we report details of the accompanying eLIXIR Research Tissue Bank of maternal and neonatal blood samples. PARTICIPANTS: Descriptive data were generated from the eLIXIR database from 1 October 2018 to 30 June 2019. Over 17 000 electronic patient records were included. FINDINGS TO DATE: 10 207 women accessed antenatal care from the 2 NHS maternity services, with 8405 deliveries (8772 infants). This diverse, inner-city maternity service population was born in over 170 countries with an ethnic profile of 46.1% white, 19.1% black, 7.0% Asian, 4.1% mixed and 4.1% other. Of the 10 207 women, 11.6% had a clinical record in mental health services with 3.0% being treated during their pregnancy. This first data extract included 947 infants treated in the neonatal intensive care unit, of whom 19.1% were postnatal transfers from external healthcare providers. FUTURE PLANS: Electronic health records provide potentially transformative information for life course research, integrating physical and mental health disorders and outcomes in routine clinical care. The eLIXIR database will grow by ~14 000 new maternity cases annually, in addition to providing child follow-up data. Additional datasets will supplement the current linkage from other local and national resources, including primary care and hospital inpatient data for mothers and their children. BMJ Publishing Group 2020-10-06 /pmc/articles/PMC7539583/ /pubmed/33028561 http://dx.doi.org/10.1136/bmjopen-2020-039583 Text en © Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/ https://creativecommons.org/licenses/by/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
spellingShingle Health Informatics
Carson, Lauren E
Azmi, Borscha
Jewell, Amelia
Taylor, Clare L
Flynn, Angela
Gill, Carolyn
Broadbent, Matthew
Howard, Louise
Stewart, Robert
Poston, Lucilla
Cohort profile: the eLIXIR Partnership—a maternity–child data linkage for life course research in South London, UK
title Cohort profile: the eLIXIR Partnership—a maternity–child data linkage for life course research in South London, UK
title_full Cohort profile: the eLIXIR Partnership—a maternity–child data linkage for life course research in South London, UK
title_fullStr Cohort profile: the eLIXIR Partnership—a maternity–child data linkage for life course research in South London, UK
title_full_unstemmed Cohort profile: the eLIXIR Partnership—a maternity–child data linkage for life course research in South London, UK
title_short Cohort profile: the eLIXIR Partnership—a maternity–child data linkage for life course research in South London, UK
title_sort cohort profile: the elixir partnership—a maternity–child data linkage for life course research in south london, uk
topic Health Informatics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7539583/
https://www.ncbi.nlm.nih.gov/pubmed/33028561
http://dx.doi.org/10.1136/bmjopen-2020-039583
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