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eLIXIR Born in South London- Early Life Data Cross-Linkage in Research- Data

Population Size

57,639

People

Population Size statistic card

Years

2018

Years statistic card

Associated BioSamples

None/not available

Associated BioSamples statistic card

Geographic coverage

United Kingdom

England

Geographic coverage statistic card

Lead time

1-2 months

Lead time statistic card

Summary

BiSL links together routinely collected information from maternity and neonatal health records along with mental health and primary care data, for a diverse population of pregnant women in South London, allowing for research across the life-course.

Documentation

Investment in the earliest stages of life is increasingly recognised to improve health across the life-course, beginning with the health of parents before pregnancy, in embryonic life, through to infancy, childhood, and into adulthood. eLIXIR BiSL combines information from routine maternity and neonatal health records and blood samples at two acute NHS Trust hospitals, along with mental health and primary care data. The study is able to address relationships between maternal and child physical health, and to investigate interactions with mental health. Participants are predominantly residents of South London, in areas with high levels of deprivation and ethnic diversity.

The BiSL data-linkage project uses opt-out consent to collect routine maternity and neonatal clinical patient data (GSTT and KCH NHS Trusts), mental health data from the SLaM CRIS platform, and primary care data from the LDN platform, for those registered with a GP in Lambeth. We hold the approval to also link with emergency and admissions data (HES), national fertility data (HFEA), and immunisation records (NIMS), as well as expanding primary care data to other boroughs in South London, namely: Southwark, Lewisham, and Bromley; the process to link these new data sources is currently ongoing.

At present, eLIXIR holds over 50,000 records. All records are deidentified, including masking of identifying information in open-text fields and use of pseudonymised identifiers. The data refresh process occurs every 6 months, and each update includes all retrospective data since conception of the cohort (October 2018), thus building a dynamic cohort.

The BiSL team includes members King’s College London Faculty of Life Sciences and Medicine and the Institute of Psychiatry, Psychology and Neurosciences (IoPPN), along with services users and patient representatives.

The eLIXIR Born in South London project has now been successfully awarded a MRC Longitudinal Population Study Grant which will enable us to operate for the next 5 years and continue building this dynamic mother-child database. BiSL is part of the MIREDA Study Partnership bringing together birth cohort data across the UK.

Dataset type

Health and disease

Dataset sub-type

Not applicable

Dataset population size

57639

Keywords

Observations

Observed Node

Disambiguating Description

Measured Value

Measured Property

Observation Date

Persons

Unique identifier pseudonym eLIXIR ID used to link together records

57639

Count

01 Oct 2018

Provenance

Collection source setting

Secondary care - In-patients, Clinic, Primary care - Clinic, Services, Community

Patient pathway description

The dataset is an integrated care record covering the entire pregnancy pathway starting from booking to delivery and 6 week postpartum.

Image contrast

Not stated

Biological sample availability

None/not available

Structural Metadata

Details

Publishing frequency

Biannual

Version

1.0.0

Modified

08/10/2024

Distribution release date

01/10/2018

Citation Requirements

eLIXIR BiSL Partnership

Coverage

Start date

01/01/2018

Time lag

More than 6 months

Geographic coverage

United Kingdom, England, London

Minimum age range

15

Maximum age range

44

Follow-up

Continuous

Accessibility

Language

en

Controlled vocabulary

LOCAL, ICD10, SNOMED CT, SNOMED RT

Format

text/tab-separated-values, text/csv

Data Access Request

Dataset pipeline status

Not available

Time to dataset access

1-2 months

Access request cost

To be requested

Access service description

Researchers interested in using the BiSL data-linkage should complete the application form. The application will be submitted to the eLIXIR BiSL Oversight Committee which decides on the scientific merit of the study and reviews any potential overlap with existing agreements.

According to the study security model, all BiSL data is held within a secure NHS firewall at SLaM, and no raw data can be removed from it.

Once approved, research users must be substantively employed by a KHP Organisation (i.e. KCL, GSTT or KCH). in order to access data. Those who are not, must obtain a SLaM Honorary Contract in order to access eLIXIR data. Any external applicant must name a KHP member of staff as a ‘Local Advisor’ in their Research Application Form. This may include PhD or MSc. students at KCL, or other institutions. However, all students must be supervised by a Principal Investigator employed by KHP or collaborating with a Local Advisor as above.

All researchers are required to complete an annual Infromation Governance/GDPR training course before being able to access data.

All research outputs must acknowledge the significant contribution of all parties to creating new value through data sharing.

eLIXIR requests not for profit funding for support of data linkage use. A tariff is calculated in a bespoke manner for each project. Researchers do not need to have funding in place before data is made available.

Jurisdiction

GB-ENG

Data use limitation

General research use,Not for profit use,Project-specific restrictions

Data use requirements

Project-specific restrictions,Collaboration required,Publication required,Not for profit use,Geographical restrictions,Time limit on use

Data Controller

King's College London King's College Hospital NHS Foundation Trust Guy's and St. Thomas's Hospital NHS Foundation Trust South London and Maudsley Hospital NHS Foundation Trust Lambeth Data Net

Data Processor

South London and Maudsley Hospital NHS Foundation Trust

Dataset Types: Health and disease


Collection Sources: Secondary care - In-patients, Clinic, Primary care - Clinic, Services, Community

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