Statistical controversies in clinical research: data access and sharing-can we be more transparent about clinical research? Let's do what's right for patients

被引:3
|
作者
Rockhold, F. W. [1 ]
机构
[1] Duke Univ, Med Ctr, Duke Clin Res Inst, Dept Biostat & Bioinformat, POB 17969, Durham, NC 27715 USA
关键词
open science; transparency; data sharing; data access; TRIAL REGISTRATION; PROJECT; EDITORS;
D O I
10.1093/annonc/mdx123
中图分类号
R73 [肿瘤学];
学科分类号
100214 ;
摘要
Calls for greater transparency and 'open data access' in clinical research are widespread, from sources including the Executive Office of the President, which in 2013 called for increased access to the results of federally funded research. In 2015, The Institute of Medicine issued a report advocating for a multi-stakeholder effort to foster responsible data sharing, and there are many others. Open science is good for researchers, good for innovation, and good for patients. The question at the center of the open-science efforts for clinical trials should not be whether data should be shared, but rather how we can usher in responsible methods for doing so. Unfortunately, there remain numerous perceived barriers to complete transparency around clinical trial data. This paper reviews the current status of data disclosure, the barriers to achieving it and a suggestion for the future.
引用
收藏
页码:1734 / 1737
页数:4
相关论文
共 50 条
  • [11] What can we do to improve the appreciation of clinical-oncological research in Germany?
    Freund, M
    DEUTSCHE MEDIZINISCHE WOCHENSCHRIFT, 2005, 130 (38) : 2123 - 2124
  • [12] WHAT DO SJOGREN'S SYNDROME PATIENTS THINK ABOUT RESEARCH?
    Martin-Gutierrez, Lucia
    Wilton, James
    Jury, Elizabeth C. Jury
    Ciurtin, Coziana
    RHEUMATOLOGY, 2019, 58 : 104 - 104
  • [13] WHAT DO SJOGREN'S SYNDROME PATIENTS THINK ABOUT RESEARCH?
    Martin-Gutierrez, Lucia
    Ciurtin, Coziana
    Jury, Elizabeth
    ANNALS OF THE RHEUMATIC DISEASES, 2019, 78 : 657 - 658
  • [14] Data Sharing from Clinical Trials - A Research Funder's Perspective
    Kiley, Robert
    Peatfield, Tony
    Hansen, Jennifer
    Reddington, Fiona
    NEW ENGLAND JOURNAL OF MEDICINE, 2017, 377 (20): : 1990 - 1992
  • [15] Clinical Observational Research on Alzheimer's Disease: What Clinical Trial Registries Can Tell
    Dal-Re, Rafael
    Fauria, Karine
    Gramunt, Nina
    Luis Molinuevo, Jose
    JOURNAL OF ALZHEIMERS DISEASE, 2013, 34 (01) : 183 - 190
  • [16] Radiologist's Guide to Evaluating Publications of Clinical Research on AI: How We Do It
    Park, Seong Ho
    Sul, Ah-Ram
    Ko, Yousun
    Jang, Hye Young
    Lee, June-Goo
    RADIOLOGY, 2023, 308 (03)
  • [17] What do we talk about when we talk about “equipoise”? Stakeholder interviews assessing the use of equipoise in clinical research ethics
    Brian Dewar
    Stephanie Chevrier
    Julie De Meulemeester
    Mark Fedyk
    Rosendo Rodriguez
    Simon Kitto
    Raphael Saginur
    Michel Shamy
    Trials, 24
  • [18] What do we talk about when we talk about "equipoise"? Stakeholder interviews assessing the use of equipoise in clinical research ethics
    Dewar, Brian
    Chevrier, Stephanie
    De Meulemeester, Julie
    Fedyk, Mark
    Rodriguez, Rosendo
    Kitto, Simon
    Saginur, Raphael
    Shamy, Michel
    TRIALS, 2023, 24 (01)
  • [19] A Clinical Research about "Moxibustion can be Used for Heat Syndrome" in Bell's Palsy
    Xu, Zhenhua
    Gu, Zhilin
    Yang, Qingsheng
    Chen, Quanxin
    2012 IEEE INTERNATIONAL CONFERENCE ON BIOINFORMATICS AND BIOMEDICINE WORKSHOPS (BIBMW), 2012,
  • [20] What do we know about social cohesion: The research perspective of the Federal Government's social cohesion research network
    Stanley, D
    CANADIAN JOURNAL OF SOCIOLOGY-CAHIERS CANADIENS DE SOCIOLOGIE, 2003, 28 (01): : 5 - 17