Upgrade to Pro — share decks privately, control downloads, hide ads and more …

Linking Results to Publications Using the NDAR Study - Gretchen Navidi

Linking Results to Publications Using the NDAR Study - Gretchen Navidi

Advancing Autism Discovery Workshop, Gretchen Navidi.

More Decks by National Database for Autism Research

Other Decks in Science

Transcript

  1. 1
    Linking Results to Publications
    Using the NDAR Study
    Advancing Autism Discovery Workshop
    April 22, 2013
    Gretchen Navidi
    National Database for Autism Research
    National Institute of Mental Health

    View full-size slide

  2. 2
    Agenda
     Overview
     Definition - What is the NDAR Study?
     Purpose - Why is it important?
     Location – Where are they?
     Policy
     Eligibility – Who can create an NDAR Study?
     Permissions – Who can access an NDAR Study?
     Schedule – When would an NDAR Study be created?
     Requirement – Who has to create an NDAR Study?
     Fundamentals
     Relationship to Publications and Data
     Instructions
     NDAR Components

    View full-size slide

  3. 3
    NDAR Study: Overview
     Definition
     Allows a researcher to record basic information about the cohort,
    measures, study types, analysis and results of a study.
     Linked to data contained in NDAR
     Linked to a publication
     Purpose
     allow others to understand the analysis in order to:
     replicate results
     understand the data analysis methods
     Location
     NDAR public website under the Data from Papers tab

    View full-size slide

  4. 4
    NDAR Study: Challenge
     NDAR Perspective
     Promote transparency
     Make published data easily available for re-use and analysis
     Allow for research and analysis opportunities for junior researchers
     Promote healthy discussion to improve science and advance discovery

    View full-size slide

  5. 5
    NDAR Study: Policy
     Eligibility
     Any user with an NDAR account can create an NDAR Study
     Results – published or not – can be promoted
     Note: underlying data must be shared in NDAR/federated repository
     Permissions
     No policy documents required for permission to create an NDAR Study
     Since accessing data contained in NDAR or federated repositories, the owner
    is still bound by other policy documents:
     Linking to own data → Data Submission Agreement
     Linking to data collected by others → Data Use Certification

    View full-size slide

  6. 6
    NDAR Study: Policy
     Schedule
     Create the NDAR Study when the publication is ‘In Press’
     NDAR staff can pull out the information needed from the paper
     Share the NDAR Study at the time of publication
     Requirement
     Researchers are not currently required to create an NDAR Study
     Highly encouraged
     States
     Private
     Ability to grant access to others
     Shared

    View full-size slide

  7. 7
    NDAR Study: Relationship to Publications
    NDAR Study #2
    Contains a subset of
    data from the Collection
    used in an analysis
    Published Paper #2
    Based on data in an
    NDAR Study
    NDAR Study #1
    Contains a subset of
    data from the Collection
    used in an analysis
    Published Paper #1
    Based on data in an
    NDAR Study
    NDAR Collection
    Contains all data for a grant
    • Phenotypic Data
    • Neuroimaging
    • Genomic
     If submit data to NDAR:
     Create a Collection → Submit all research data
     Analyze
     Publish
     Report results in NDAR Study → Link to publications

    View full-size slide

  8. 8
    NDAR Study: Relationship to Publications
    NDAR Study #1
    Contains a subset of data
    from the Collection used
    in an analysis
    Published Paper #1
    Based on data in an
    NDAR Study
    NDAR Collection 1
    • Phenotypic Data
    • Neuroimaging
    NDAR Collection 2
    • Phenotypic Data
    • Neuroimaging
    • Genomic
     If Access data in NDAR:
     Query > 1 Collections/Repositories 8→ Retrieve Results
     Compute/Process → Load and Analyze
     Publish
     Report results in NDAR Study → Link to publications

    View full-size slide

  9. 9
    NDAR Study: Examples

    View full-size slide

  10. 10
    NDAR Study: Examples

    View full-size slide

  11. 11
    NDAR Study Components
     General Information
     Cohort
     Measures
     Study Types
     Data Analysis
     Results
     Permissions

    View full-size slide

  12. 12
    NDAR Study: General Information 1

    View full-size slide

  13. 13
    NDAR Study: General Information 2

    View full-size slide

  14. 14
    NDAR Study: Cohort

    View full-size slide

  15. 15
    NDAR Study: Cohort

    View full-size slide

  16. 16
    NDAR Study: Cohort
     Data can be associated with an NDAR Study by associating
    subject GUIDs when creating the NDAR Study.
     Option to narrow down the measures (data structures) and even
    the measure related data elements used in the analysis

    View full-size slide

  17. 17
    NDAR Study: Measures
     Data structures
    will automatically
    be populated
    based on data for
    GUIDs already
    associated with
    the defined
    cohorts
     Select data
    structures used in
    analysis

    View full-size slide

  18. 18
    NDAR Study: Measures
     Select data
    structures used in
    analysis
     Select specific
    data elements
    used in analysis
     Define the
    measure/data
    structure and data
    elements as either
    primary or
    secondary.

    View full-size slide

  19. 19
    NDAR Study: Study Types
     Controlled or
    observational
     Options for the
    study description,
    study arms/
    comparison
    groups and
    intervention type
    are customized
    depending on
    whether the type
    is controlled or
    observational.

    View full-size slide

  20. 20
    NDAR Study: Data Analysis
     Further information options become available depending on the
    type of analysis

    View full-size slide

  21. 21
    NDAR Study: Data Analysis
     Further information options become available depending on the
    type of analysis

    View full-size slide

  22. 22
    NDAR Study: Results
     Upload supporting documentation or provide urls for websites with
    more information.

    View full-size slide

  23. 23
    NDAR Study: Permissions
     Provide
    permissions to
    other users
    while NDAR
    Study is in a
    private state.
     Read Only
     Administrator

    View full-size slide

  24. 24
    NDAR Study: Register NDAR Study with Publication

    View full-size slide

  25. 25
    NDAR Study: Linking Publications and Data

    View full-size slide

  26. 26
    Data from Papers

    View full-size slide

  27. 27
    Data from Papers
    Direct access to the NDAR Collection
    for users with access to the NDAR
    Portal.
    List of project investigators.
    Study abstract
    Link to study
    results/publication.

    View full-size slide

  28. 28
    Data from Papers
    Direct access to the NDAR Collection
    for users with access to the NDAR
    Portal.
    List of project investigators.
    Study abstract
    Link to study
    results/publication.

    View full-size slide

  29. 29
    Data from Papers
    Study cohorts defined according to
    NDAR methods.
    Data used in the analysis which
    can be linked back to data
    structures in the NDAR Data
    Dictionary
    Analysis methods defined

    View full-size slide

  30. 30
    NDAR Study Features
     NDAR Philosophy
     Develop foundation and work with community to extend
     Example: NDAR data dictionary started with ~20 measures and has
    been extended over the past 5 years by NDAR and the community
     All components have been pre-populated yet allow for new
    options to be added
     Encourage community to notify us about new methods and
    options for analysis, tools, etc to keep the NDAR Study
    feature up to date

    View full-size slide

  31. 31
    NDAR Study: Planned Features
     Ability to share the NDAR Study while still maintaining some
    or all of the underlying data in a private state.
     Ability to query the NDAR Study
     Ability to query by Data Element
     Registration and linkage of publications using the Digital
    Object Identifier (DOI)

    View full-size slide

  32. 32
    Discussion Points
     Grant Related Issues
     Should this be an expectation for all published papers?
     Should this be added to the terms and conditions of award?
     Should this and other data submission activities be part of the grant
    application review process?
     Schedule Issues
     Is the schedule for creation of and sharing of an NDAR Study
    acceptable?
     Technical Issues
     Areas for Improvement
     How can we make it easier to use
     Provide a template
     Methods to increase awareness and adoption of use

    View full-size slide

  33. 33
    Discussion Points
     Marketing
     Methods to increase awareness and adoption of use
     Work with publishers to require NDAR Study and link in publication
     Open up NDAR Study to journal reviewers to review a paper and
    underlying data prior to acceptance
     Create a culture shift
     Data sharing
     Transparency
     Collaboration
     Replication of results

    View full-size slide

  34. 34
    Contact Information
     Public Website
     http://www.ndar.nih.gov
     NDAR Study
     http://ndar.nih.gov/data_from_papers.html
     Help Desk
    [email protected]
     Gretchen Navidi (NDAR)
    [email protected]

    View full-size slide