Generations of a family of four with a newborn daughter

Researchers

The eLIXIR Cohort Programme will link maternal and child routine physical and mental health data with local and nationally available databases. 

Information for researchers

The data will be suitable for sharing between King's Health Partner sites and UK academics.

The eLIXIR programme welcomes applications from researchers interested in using the data linkage or biobank. Our policy of data sharing aligns with that recommended by the UKRI Medical Research Council which funded the development of the eLIXIR data linkage.

https://www.ukri.org/wp-content/uploads/2021/08/MRC-0208212-MRC-policy-and-guidance-on-sharing-of-research-data-from-population-and-patient-studies-Word-version-v01.02.pdf

Longitudinal studies, such as eLIXIR with repeat observations of cohorts of participants -, are rich resources for multi- and interdisciplinary investigations of development, and the effects of early adversities on health in later life.   MRC’s overarching aim for data-sharing is ‘ to maximise the life-time value of research data assets for human health and to do so timely, responsibly, with as few restrictions as possible, in a way consistent with the law, regulation and recognised good practice’. eLIXIR fully concurs with this aim. Following agreement from the Oversight Committee (see below) for access to the data/samples,  a data/sample sharing agreement is drawn up by KCL Research and Contracts team, and signed by a King’s College London representative and the Study Principal Investigator. The eLIXIR executive shall ensure that measures are in place to protect the confidentiality of study participants and the security of data sets when they are shared with, or analysed on behalf of, new users, and that practice complies with legal and regulatory requirements and relevant best practice.

The eLIXIR team shall ensure that metadata documentation and personnel with relevant knowledge and expertise will support the understanding and use of study datasets by new and external researchers. Our team will log data transfers and ensure that the data and accompanying documentation (metadata) are prepared to the agreed standards.

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

Our data sharing and dissemination policy also subscribe to NHS Digital Access Request Service (DARS), Data Sharing standard 5c, a pre-requisite for access to NHS Digital datasets.

 

Researchers or research organisations in the UK interested in using the eLIXIR data linkage/biobank should complete the eLIXIR Research Application Form (RAF). The application will be submitted to the eLIXIR Oversight Committee which decides on the scientific merit of the study and reviews any potential overlap with existing agreements. Applications will be considered from academic and, potentially, commercial bodies, all of which must be for bona fide research or educational purposes.

 

Once permissions have been given, in order to access data, research users substantively employed by a KHP Organisation (i.e. King’s College London, King’s College Hospital NHS Foundation Trust, or Guy’s and St Thomas’ NHS Foundation Trust) must have a KHP Passport which names SLaM as a host institution, and Mr. Matthew Broadbent (CRIS Clinical Informatics Lead, NIHR Maudsley Biomedical Research Centre, SLaM) as the Line Manager.

Research users who are not substantively employed by a KHP Organisation 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 King’s College London, 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 a GDPR training course offered online by King’s College London, SlaM, or equivalent training from other Trusts or universities, before being able to access data.

eLIXIR requests non-profit funding for support of data linkages and sample use. A tariff is calculated in a bespoke manner for each project. Researchers do not need to have funding in place before submission of a RAF but the agreed funding must be secured before data or samples are made available.

To request a RAF form and relevant submission deadlines, please contact: Ms. Tisha Dasgupta, Coordinator tisha.dasgupta@kcl.ac.uk  

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