The MRC Unit for Lifelong Health and Ageing at UCL (LHA) is committed to the core principles of the MRC with regard to data sharing. The LHA actively encourages the sharing of its cohort data with scientists for high quality research projects, to ensure that the scientific potential of the cohorts are maximised. Data sharing must be within the bounds of consent given previously by study members and meet rigorous MRC data security standards.
All proposals to use cohort data must support and adhere to the core principles of data sharing with the MRC, namely:
- Ethical: The privacy of individuals and the dignity of communities must be protected, while simultaneously respecting the imperative to improve public health through the most productive use of data.
- Equitable: All proposals should recognise and balance the needs of researchers who generate and use data, other analysts who may want to reuse those data, and communities and funders who expect health benefits to arise from research.
- Efficient: Approaches should be proportionate and build on existing practice and reduce unnecessary duplication and competition.
NSHD data sharing
The MRC National Survey of Health and development (NSHD) has a data archive with over 20,000 variables collected over the lifetime of the study. The archive preserves data and meta-data (descriptions of the data) in electronic, paper, fiche, and, increasingly, image form, and includes biological samples.
The NSHD data sharing platform is called Skylark, which is composed of two companion systems:
A wiki: https://skylark.ucl.ac.uk
The wiki provides users with a detailed description of the study including all data collections across its 70+ years. The wiki includes:
- background information about the NSHD
- all annotated questionnaires and other paper instruments
- a description of the major topics, including information on repeated measures and standard variables
- information about the variable search facility and guides on how to locate variables
- NSHD information governance
- a complete description of the NSHD data sharing process, including all the forms necessary to set up a data sharing agreement and submit a data access request
A variable search facility: https://skylark.ucl.ac.uk/Skylark
The variable search facility provides a platform to locate metadata covering more than 25,000 NSHD variables. Users will need to register, before they can log in to search for variables of interest, which can then be added to personal shopping baskets and saved. Following a successful data sharing application, these baskets will then be processed by NSHD staff and the data sent out.
Citing NSHD data using DOIs
The NSHD now has a set of persistent identifiers (DataCite DOIs, or just DOIs) that allow the tracking of research datasets as well as publications. It is important that all authors cite these DOIs in publications based on NSHD data.
SABRE Data Sharing
SABRE has an archive of over 5000 variables collected at visits 1 and 2. The most recent visit 3 data (2014-2018) will be added to this archive once cleaned. We are in the process of developing a data sharing platform (Swallow) which will work in a similar way to that of NSHD (Skylark). While the new platform is being developed, we will continue to welcome applications for SABRE data sharing in accord with the core principles of the MRC.
The cohort profile lists the types of data available from visit 1 (1989-91) and first follow-up (visit 2:2008-2011).
If you would like to find out more about sharing SABRE data please email Therese Tillin (firstname.lastname@example.org) with a brief outline of your proposed research and the data that you would need.