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

Cohort profile: the eLIXIR Partnership-a maternity-child data linkage for life course research in South London, UK.
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DOI:
10.1136/bmjopen-2020-039583
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发表时间:
2020-10-06
期刊:
影响因子:
2.9
通讯作者:
eLIXIR Partnership
eLIXIR Partnership
中科院分区:
医学3区
文献类型:
--
作者:
Carson LE;Azmi B;Jewell A;Taylor CL;Flynn A;Gill C;Broadbent M;Howard L;Stewart R;Poston L;eLIXIR Partnership

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建立了相关的产妇、新生儿和产妇心理健康记录,以支持对母亲和儿童的身心健康的早期生命起源的研究。早期生活交叉链接研究(ELIXIR)伙伴关系于2018年开发,生成了一个实时、假名、结构化数据的储存库,该数据来自伦敦南部两个急性和一个精神卫生保健国家卫生服务(NHS)提供商的电子健康记录系统。我们介绍了链接数据库的早期描述性数据以及强大的数据安全和治理结构,并描述了数据库在最初开发的基础上进行扩展的打算。此外,我们还报告了母体和新生儿血液样本的随附长生不老药研究组织库的详细信息。描述性数据从2018年10月1日至2019年6月30日从长生不老药数据库中产生。其中包括17000多份电子病历。10 207名妇女从2个NHS产科服务机构获得产前护理,分娩8405名(8772名婴儿)。这一多样化的市内产科服务人口出生在170多个国家,白人占46.1%,黑人占19.1%,亚裔占7.0%,混血占4.1%,其他占4.1%。在10207名妇女中,11.6%的人有过精神卫生服务的临床记录,3.0%的人在怀孕期间接受治疗。这第一份数据摘录包括947名在新生儿重症监护病房接受治疗的婴儿,其中19.1%是从外部医疗保健提供者那里出生后转移过来的。电子健康记录为生命历程研究提供了潜在的变革性信息,将生理和心理健康障碍和结果纳入常规临床护理。长生不老药数据库除了提供儿童随访数据外,还将每年增加约14000例新的产科病例。额外的数据集将补充来自其他地方和国家资源的现有联系,包括初级保健和母亲及其子女的住院数据。
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. Descriptive data were generated from the eLIXIR database from 1 October 2018 to 30 June 2019. Over 17 000 electronic patient records were included. 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. 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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