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NDAR provides a single access to de-identified autism research data. For permission to download data, you will need an NDAR account with approved access to NDAR or a connected repository (AGRE, IAN, or the ATP). For NDAR access, you need to be a research investigator sponsored by an NIH recognized institution with federal wide assurance. See Request Access for more information.

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Data Contribution

Submission Training

NDAR accepts human subjects research data related to autism. All individuals planning to contribute data must meet the following prerequisites:

  1. Obtain Informed Consent
  2. Collect the PII data associated with the NDAR GUID
  3. Estimate the cost of data sharing (see Cost Estimation)

Once the prerequisites are considered, follow these steps:

  1. Read the NDAR Policy.
  2. Complete Data Submission Agreement

    The principal investigator must complete the Data Submission Agreement and have it signed by a signing official at an NIH recognized institution. If you don't know your institution's signing official, contact us at The NDA Help Desk for assistance.

  3. Request an NDAR Account

    Create an account by completing Request Account and upload the scanned Data Submission Agreement.

  4. Define Data Expected for Submission

    Create a list of all data that you plan to collect along with the number of subjects, the initial submission date and the anticipated share date. This list can be created directly in a Collection and is expected to be created within 6 months of award.

    • Add a Data Expected Item: Start by clicking the green plus icon next to 'Add New Data Expected' in a Collection. There are two options available:
      • Search by Data Structure Title – Use this option for data structures that are already defined in the Data Dictionary. Start to type a data structure name in the search box and a list of options will be provided. Select the appropriate option.
      • Upload Definition – Use this option for data structures that have not yet been defined. Provide a new structure title and then upload a file using the Choose File button. Provide a scanned copy of the assessment and/or an electronic version of a data definition, if you have already created one.
    • Targeted Enrollment: Enter the number of subjects targeted for the data structure.
    • Initial Submission Date: Using the calendar, provide the initial date on which the data for the structure will be submitted. (Refer to the Data Sharing Policy for more information on submission dates for Descriptive and Analyzed Data.)
    • Initial Share Date: Using the calendar, select the initial date on which the data will be shared. (Refer to the Data Sharing Policy for more information on share dates for Descriptive and Analyzed Data.)

    List changes are reviewed and approved by NDA staff. You can check the status of the approval on the Data Expected tab. If you have uploaded a document for a new data structure, you will be contacted by staff members to develop the data definition.

Once you have access, you and your staff can prepare data for submission:

  1. Generate GUIDs

    Human subjects data submitted to NDAR must have a GUID. To generate GUIDs using the PII collected at the research site - or to create random identifiers for retrospective studies - review the section on the NDAR GUID. Use the "Launch GUID" button below or the command line tool.

    GUID Training

    Launch GUID

  2. Plan for Data Submission

    All data must have a corresponding data structure defined in the NDAR Data Dictionary. Most published measures are now defined. However, if the data you need to submit is not defined or the Data Dictionary does not meet your needs, contact us at The NDA Help Desk and we will make the necessary changes to make data submission as simple as possible.

  3. Validate Data

    Data must be formatted as CSV or txt (tab delimited) files with two header rows. The first row must contain the data structure name and version number. This is listed in the Data Dictionary under short_name. For example, a short_name of abc_community02 would have a submission template of abc_community and version 02. The next header record is the element name. All ensuing rows contain data. See the example template for abc_community. Templates (and definitions) are available to view and/or download by clicking the appropriate link within the data structure in the Data Dictionary section of the website. Once data is harmonized to the autism data definition, run the Validation and Upload tool (these are now combined) to submit data:

    Validation and Upload Tool
    Expand InstructionsInstructions

    Now you are ready to validate your data. NDAR has developed a Validation Tool to check all data to ensure that they are harmonized to the NDAR data standard. The Validation Tool, which can be used independently of NDAR, ensures the following:

    1. NDAR data element names are used. An alias capability allows you to map your names to the NDAR name. You can also do this mapping within your system.
    2. An element that is designated as "Required" must be provided for your data to pass validation.
    3. If defined, value ranges must be met or adjusted if your data falls outside of defined value ranges.
    4. "Conditional" fields ensure the entry of certain values based upon other fields (e.g. zygosity is conditionally required if twin_study = Yes).

    Additionally, NDAR provides a fairly simple translate capability to translate some values that may exist globally within your data. For example, 'Y' can be translated to 'Yes' and 'Male' to 'M' which may be useful for you when submitting data.

  4. Share Data

    Unless a specific schedule for data sharing has been defined in advance, data submitted to NDAR are generally shared within 4 months of submission. During this time period, data remain in a private state to allow time for the quality of the data to be reviewed by the Collection owner and NDAR staff (see SOP-5 Quality Assurance and Quality Control). Datasets contributed to the NDAR Central Repository are then shared with those users with appropriate access.

  5. Create an NDAR Study

    As soon as a publication appears in PubMed, the citation and link will be viewable in the NDAR Collection associated with the grant number for the publication. Collection owners and administrators are encouraged to define the relevancy of the paper to the data collected and submitted to NDAR. Options include:

    • Relevant — The data used in the publication were collected as part of the grant associated to the Collection and are submitted to NDAR.
    • Not Relevant — The data used in the publication were not collected as part of the grant associated to the Collection or the publication is a review article.
    • Not Determined — The relevancy of the data to the grant and/or the data submitted to NDAR has not yet been determined.

    Relevant publications are expected to be associated with an NDAR Study. An NDAR Study, aka Data from Papers, allows the cohorts, measures and methods to be defined and the publication can then be associated with the underlying data in NDAR. NDAR staff would be happy to help create the NDAR Study and associate it to a publication marked as Relevant. Send us a write-up of your results, data analysis methods, and subject GUIDs for each cohort. NDAR will then make your results available through our Data from Papers page and link the publication listing in PubMed back to your raw data. This should be done prior to a publication to allow us time to share your results on the same day that it is published.

    NDAR Study Launch Tutorial
    Last Updated: March 6, 2014

    To access the Publications tab from the Data from Labs page, click the Edit button for your Collection then select the Publications tab. Contact us at the The NDA Help Desk.