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eLIXIR Born in South London- Early Life Data Cross-Linkage in Research- Data
Population Size
57,639
People
Years
2018
Associated BioSamples
None/not available
Geographic coverage
United Kingdom
England
Lead time
Not applicable
Summary
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.
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
Structural Metadata
Details
08/10/2024
01/10/2018
Coverage
01/01/2018
Accessibility
Data Access Request
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.
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