PDS Group Invited Session At ICTMC 2017 (Inc. Slides)


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    Dear all,

    The Participant Data Sharing Task and Finish Group organised a special session ‘Sharing individual participant data from clinical trials: Current practice and future thinking’ at the 4th International Clinical Trials Methodology Conference in Liverpool on 9th May.  The following people took part and copies of their presentations have been attached.

    • Nicola Howe (Newcastle University) who presented results from systematic review of patient perspectives on data sharing;
    • Trish Groves (BMJ) who provided an overview of data sharing from the perspective of a medical journal;
    • Matt Sydes (MRC CTU) who summarised an approach for sharing data from publicly funded trials;
    • Gill Booth (Leeds Clinical Trials Research Unit) who discussed methods for protecting the patient’s trust when sharing data;
    • Jean-Marc Ferran (PhUSE) who provided an overview of the work undertaken by PhUSE to develop anonymisation standards;
    • Sean Coady (NIH/NHLBI) who gave an overview of how clinical trial patient data are being shared in the BioLINCC data repository;
    • Bill Christopher (GSK) who gave the pharmaceutical perspective and outlined how data are shared through ‘Clinical Study Data Request.com’; and
    • Sarah Nevitt (University of Liverpool) who summarised her experiences of conducting research using patient data from clinical trials



    Louise Williams
    UKCRC Registered CTU Network


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