Literature DB >> 31347390

Open science: The open clinical trials data journey.

Frank Rockhold1, Christina Bromley2, Erin K Wagner2, Marc Buyse3.   

Abstract

Open data sharing and access has the potential to promote transparency and reproducibility in research, contribute to education and training, and prompt innovative secondary research. Yet, there are many reasons why researchers don't share their data. These include, among others, time and resource constraints, patient data privacy issues, lack of access to appropriate funding, insufficient recognition of the data originators' contribution, and the concern that commercial or academic competitors may benefit from analyses based on shared data. Nevertheless, there is a positive interest within and across the research and patient communities to create shared data resources. In this perspective, we will try to highlight the spectrum of "openness" and "data access" that exists at present and highlight the strengths and weakness of current data access platforms, present current examples of data sharing platforms, and propose guidelines to revise current data sharing practices going forward.

Entities:  

Keywords:  Open science; data sharing; individual participant data; transparency

Year:  2019        PMID: 31347390     DOI: 10.1177/1740774519865512

Source DB:  PubMed          Journal:  Clin Trials        ISSN: 1740-7745            Impact factor:   2.486


  7 in total

Review 1.  Clinical Trial Endpoints in Metastatic Cancer: Using Individual Participant Data to Inform Future Trials Methodology.

Authors:  Richard M Goldberg; Richard Adams; Marc Buyse; Cathy Eng; Axel Grothey; Thierry André; Alberto F Sobrero; Stuart M Lichtman; Al B Benson; Cornelis J A Punt; Tim Maughan; Tomasz Burzykowski; Dirkje Sommeijer; Everardo D Saad; Qian Shi; Elisabeth Coart; Benoist Chibaudel; Miriam Koopman; Hans-Joachim Schmoll; Takayuki Yoshino; Julien Taieb; Niall C Tebbutt; John Zalcberg; Josep Tabernero; Eric Van Cutsem; Alastair Matheson; Aimery de Gramont
Journal:  J Natl Cancer Inst       Date:  2022-06-13       Impact factor: 11.816

2.  Infectious diseases epidemiology, quantitative methodology, and clinical research in the midst of the COVID-19 pandemic: Perspective from a European country.

Authors:  Geert Molenberghs; Marc Buyse; Steven Abrams; Niel Hens; Philippe Beutels; Christel Faes; Geert Verbeke; Pierre Van Damme; Herman Goossens; Thomas Neyens; Sereina Herzog; Heidi Theeten; Koen Pepermans; Ariel Alonso Abad; Ingrid Van Keilegom; Niko Speybroeck; Catherine Legrand; Stefanie De Buyser; Frank Hulstaert
Journal:  Contemp Clin Trials       Date:  2020-10-22       Impact factor: 2.226

Review 3.  Health sciences librarians' engagement in open science: a scoping review.

Authors:  Dean Giustini; Kevin B Read; Ariel Deardorff; Lisa Federer; Melissa L Rethlefsen
Journal:  J Med Libr Assoc       Date:  2021-10-01

4.  Prediction of treatment outcome in clinical trials under a personalized medicine perspective.

Authors:  Paola Berchialla; Corrado Lanera; Veronica Sciannameo; Dario Gregori; Ileana Baldi
Journal:  Sci Rep       Date:  2022-03-08       Impact factor: 4.379

Review 5.  Surrogacy Beyond Prognosis: The Importance of "Trial-Level" Surrogacy.

Authors:  Marc Buyse; Everardo D Saad; Tomasz Burzykowski; Meredith M Regan; Christopher S Sweeney
Journal:  Oncologist       Date:  2022-04-05

6.  Protocol for the development of a repository of individual participant data from randomised controlled trials conducted in adult care homes (the Virtual International Care Homes Trials Archive (VICHTA)).

Authors:  Lisa Irvine; Jennifer Kirsty Burton; Myzoon Ali; Terence J Quinn; Claire Goodman
Journal:  Trials       Date:  2021-02-23       Impact factor: 2.279

7.  Discoverability of information on clinical trial data-sharing platforms.

Authors:  Paije Wilson; Vojtech Huser
Journal:  J Med Libr Assoc       Date:  2021-04-01
  7 in total

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