Already a member?

Sign In

Opening up access to Birth Cohort Study Data

Presenter 1
Jack Kneeshaw
UK Data Archive

The UK Medical Research Council (MRC) policy on data sharing recognises the value of making scientific data (eg. population and clinical trials) more widely available across the research community. If not creating true open data resources, the MRC's policy involves opening up access to previously (relatively) inaccessible life-course data. To this end, the MRC is currently running a pilot project designed to test the feasibility of preparing and making data more widely available from the accomplished 1946 British Birth Cohort Study, and the National Survey of Health and Development (NSHD). Using Nesstar as the data sharing tool, the pilot aims to evaluate the costs and benefits of opening up access to the NSHD data and to document lessons learned that may inform similar activities in the bio-medical area undertaken in the future. Special attention is given to the particularities of opening up access to a long-running longitudinal study which, due to the age of the study, has traditionally been poorly-documented, and to balancing likely increased scientific outputs with risk of disclosure. Among the key scientific outputs that the project is interested in examining is the feasibility of researchers sharing new variables derived from the study.

Presentation File: 
  • IASSIST Quarterly

    Publications Special issue: A pioneer data librarian
    Welcome to the special volume of the IASSIST Quarterly (IQ (37):1-4, 2013). This special issue started as exchange of ideas between Libbie Stephenson and Margaret Adams to collect


  • Resources


    A space for IASSIST members to share professional resources useful to them in their daily work. Also the IASSIST Jobs Repository for an archive of data-related position descriptions. more...

  • community

    • LinkedIn
    • Facebook
    • Twitter

    Find out what IASSISTers are doing in the field and explore other avenues of presentation, communication and discussion via social networking and related online social spaces. more...