Clinical trial data access: Opening doors with TrialShare - Journal of Allergy and Clinical Immunology
peter.suber's bookmarks 2019-02-27
"The need for improved access to clinical trial data is widely recognized to ensure complete information is in the public domain, to honor the commitment of research subjects, and to empower and engage analytic talent across the worldwide biomedical community. Open access to patient-level data from clinical trials enables data transparency, fosters data sharing, and catalyzes research innovation. As noted by Ross and Krumholzm1 “A wall surrounds much… clinical research data, sequestering knowledge, impeding the free flow of information, and obscuring a clear view of the totality of evidence relevant to many research questions and clinical decisions.” Mello et al2 stress the benefits of data transparency, which range from improving reporting accuracy to improving patient safety, as well as speeding innovation....
Immune Tolerance Network (ITN) TrialShare, a novel portal for viewing and analyzing complete data sets from ITN trials, demonstrates this commitment through open access and user-friendly analytic tools. ITN TrialShare integrates data display from laboratory outputs, biomarker outcomes, and clinical and demographic attributes across a wide range of immunologic diseases and interventions, including the recent Learning Early About Peanut Allergy (LEAP) and LEAP-ON studies. This has enabled interested investigators to directly access and use large data sets for novel discovery and/or validation purposes, lowering many common barriers in translational research. In this brief article we describe our early experience with TrialShare, an online research resource that provides immunologic and clinical trial data from the ITN...."