Information to access the PRECISE samples and data
The PRECISE Newtork 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 PRECISE data linkage.
Longitudinal studies, such as PRECISE 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’. PRECISE fully concurs with this aim. Following agreement from the Data and Sample Access 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, recruiting hubs representatives and the Study Principal Investigator. The PRECISE 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 PRECISE 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.
Researchers or research organisations interested in using the PRECISE data linkage/biobank should complete the PRECISE Research Application Form (RAF). The application will be submitted to the PRECISE Data and Sample Access 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 who are not substantively employed by a KHP Organisation must obtain a KCL Honorary Contract in order to access PRECISE data. Any external applicant must name a PRECISE member 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 PRECISE 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, or equivalent training from other Trusts or universities, before being able to access data.
PRECISE 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: Dr Marie-Laure Volvert, PRECISE Senior Research Programme manager marie-laure.volvert@kcl.ac.uk
Find here the list of studies that have been approved by the PRECISE Data and Sample Access committee :
PRECISE – Approved Studies Using PRECISE Dataset and Samples
