Comments on the ICMJE’s Proposals for Sharing Clinical Trial Data

Displaying 281 - 285 of 320 comments
  • Verena Goodman
    None
    Role(s): Other
      • Former Researcher
    Date Submitted: Tuesday, January 26, 2016 - 09:27

    Requirement To Share Data
    • I agree with this general approach

    6 Month Time Frame
    • I agree with this general approach

    Require a Data Sharing Plan
    • I agree with this general approach

    Providing Credit
    • I agree with this general approach

    Position:
    Comments:
  • Prudence Barton
    Williamstown Medical
    Role(s): Patient
    Date Submitted: Tuesday, January 26, 2016 - 08:40

    Requirement To Share Data
    • I agree with this general approach
    Comments: I am a patient and retired librarian so I have always wanted to verify sources. Sharing data seems to be an honest and more efficient way for research to move forward more quickly with the shared data as a building block for other researchers. Transparency would streamline the whole process.

    6 Month Time Frame

    Require a Data Sharing Plan

    Providing Credit

    Position:
    Comments:
  • Dave Huegel
    none
    Role(s): Patient
    Date Submitted: Tuesday, January 26, 2016 - 08:36

    Requirement To Share Data
    • I agree with this general approach
    Comments: I am a stroke patient. When my wife was hospitalized I asked the attending physician if the medications and their possible side effects that she was on could have an effect on her overall health,or could there be a conflict. His answer was no. After reading the small print in the info sheet,I found that to be inaccurate. Transparency and access to important medical information should be at the forefront,and not left to the laymen reading small print on an info sheet with a magnifying glass. Thank You,I am Dave Huegel,spouse of Elizabeth Huegel ...Decsd.

    6 Month Time Frame
    Comments: Just protect legal aspects,but make all information transparent and accessible.

    Require a Data Sharing Plan
    Comments: Responsibility should lay on the pharma,and all who profit from sales,and Not on the M.D.

    Providing Credit

    Position:
    Comments:
  • David Weiss
    InSilico Genomics SA
    Role(s):
    • Researcher
    • Other
      • Director
    Date Submitted: Tuesday, January 26, 2016 - 08:23

    Requirement To Share Data
    • I agree with this general approach

    6 Month Time Frame
    Comments: I disagree. Data should become available immediately. The patient should be asked if they wish to be recontacted and if they do, there should be a mechanism for asking additional information, and even samples. I believe this is in the patient's best interest.

    Require a Data Sharing Plan
    • I agree with this general approach

    Providing Credit
    • I agree with this general approach
    Comments: Make datasets citable, by assigning them a doi.

    Position:
    Comments:
  • Jesse Raab
    University of North Carolina at Chapel Hill
    Role(s): Researcher
    Date Submitted: Tuesday, January 26, 2016 - 08:09

    Requirement To Share Data
    • I agree with this general approach

    6 Month Time Frame
    Comments: Underlying data should be available immediately upon publication. No reviewer should approve data that he or she has not seen. Additionally, a small number of reviewers eyes is not sufficient to identify all possible errors. The goal of medical research is to improve benefits to patients. Locking data away for 6 months is not congruent with best practices for science or for patients.

    Require a Data Sharing Plan
    • I agree with this general approach

    Providing Credit
    Comments: I completely disagree. We have a method for providing credit to those who generate and share data, citations. Additionally, the data collector has first rights to publishing on the data. Once that data is published, all underlying data should immediately made available, and appropriate credit will be given through citations. As a thought experiment, consider who else should be listed on papers under the proposed scheme, all authors of the human genome project? That data is use in nearly all medical research. How about all authors and developers of statistical software, should all authors of the UCSC Genome Browser project be included. Protocols can be difficult to optimize, should scientists who spend their hard time providing this methodology be included as authors? Of course not, we cite them for their contribution. Data collection is not some special class of science.

    Position:
    Comments:

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