Data Submission

This page provides an overview of the steps necessary to submit data to the NDAR Data Repository.

1. Submission Coordination

   ASD Researchers who plan to provide research data to NDAR should contact the NDAR program manager at ndar@mail.nih.gov to coordinate their submission. NDAR can accept data submissions for common assessments used in ASD research defined in the data dictionary below as well as genomics and imaging data.

2. Pre-Conditions for data submission

   Researchers interested in submitting data to NDAR should review the data submission procedures at NDAR Data Submission and contact the NDAR team at ndar@mail.nih.gov to help plan for data submission. The general steps required to be able to submit data to NDAR include:

   • Software Transfer Agreement (STA) - This agreement allows NDAR to provide the researcher's institution with the software necessary to generate the NDAR Global Unique IDs (GUIDs).
   • Data Submission Agreement - This document is completed by the researcher and an authorized institutional business official. The Submission Agreement (SA) is reviewed by the NDAR Data Access Committee (DAC), which consists of NIH employees with expertise in areas such as relevant scientific disciplines, research participant protection, and privacy protections. Once the DAC authorizes data submission, the researcher completes the GUID STA. Once the SA is approved and the STA is completed, the research and associated staff will be given appropriate privileges in the NDAR portal.
   • NDAR Account - The researcher should request an NDAR Account at Accessing NDAR attaching the above, signed documents to the account request.

   For technical details on submitting data to NDAR, please review the NDAR Data Validation and Submission and User Guide   [Last updated: Jul 30, 2008]

3. Obtain NDAR GUID for all participants

   All data submitted to NDAR must be stripped of direct identifiers (e.g., name, contact information) and contain an NDAR GUID (Global Unique Identifier) for each participant.

   The NDAR Global Unique Identifier Web Service System (GUIDWS) provides a platform for users to share participant data (e.g. clinical assessment data, genetic data) without exposing the personally identifiable information (PII) of the participants.

   NDAR is dedicated to enhancing collaboration in ASD research and clinical practice. The system described here (GUIDWS) consists of a web service application for obtaining NDAR GUIDs. Researchers will collect PII for a participant, and encrypt the PII using a secure one-way hash function. When the researcher requests a GUID from NDAR for the chosen participant, the GUIDWS client sends the hash codes associated with the participant to GUIDWS server. The GUIDWS server inputs those hash codes and returns a GUID for that participant back to the GUIDWS client. For additional details on the GUIDWS and how it works see:

   • GUIDWS: How it Works   [Last updated: Dec 19, 2008]
   • Software Transfer Agreement   [Last updated: Jul 30, 2008]

   To receive a GUID client, please select "Request GUID Client" for your NDAR Portal account request.

4. Standardize data for NDAR submission

   In order to submit data to NDAR, data must be in the NDAR-supported format. The data standard for the supported NDAR data types are described below:

   • Clinical Assessments Data
     

     NDAR has adopted the CDISC ODM XML standard for accepting clinical assessments data. Data from the NDAR supported clinical assessment forms must be in CDISC ODM XML format. The NDAR data dictionary defines the field names and acceptable values for each NDAR supported clinical assessment form which the CDISC ODM XML data file(s) must adhere to. The data dictionary contains a template with instructions to convert clinical assessment data into CDISC ODM XML format as well as a sample file. See the "Submitting Data to NDAR" section for more detailed information on clinical assessments submissions.

     • NDAR Clinical Assessments & Imaging Codebook   [Last updated: Dec 19, 2008]
     • ACE Required Measures

       The following is a listing of Common Measures (Clinical Assessment Instruments) which ACE researchers are required to submit to NDAR

       • ADOS
       • ADI-R
       • CHARGE Family Characteristics   [Last updated: Jul 30, 2008]
       • CHARGE Medical History   [Last updated: Jul 30, 2008]
       • CHARGE Physical Exam   [Last updated: Jul 30, 2008]
       • Karyotype   [Last updated: Jul 30, 2008]
       • Modified CHARGE Family Medical History   [Last updated: Jul 30, 2008]
       • NIMH Medical History Questionnaire   [Last updated: Jul 30, 2008]
       • Vineland II -- Survey Interview Form
       • Vineland II -- Parent and Caregiver

       Other clinical assessments supported by NDAR include:

       • Aberrant Behavior Checklist
       • PDDBI
       • Social Communication Questionnaire (SCQ)
       • SRS Parent Report (2005)
       • MCHAT (1999)
       • MULLEN Scales of Early Learning - AGS Edition (1995)
       • Peabody Picture Vocabulary Test (PPVT)
       • Differential Ability Scales
       • Wechsler Intelligence Scale for Children - IV (WISC-IV)
       • Wechsler Abbreviated Scale of Intelligence (WASI)
       • Wechsler Adult Intelligence Scale (WAIS) III
   • Imaging Data
     

     NDAR has adopted the MIPAV XML format for gathering metadata on images to be submitted to NDAR. The MIPAV (Medical Image Processing, Analysis, and Visualization) application enables quantitative analysis and visualization of medical images of numerous modalities such as PET, MRI, CT, or microscopy. MIPAV contains a module that will process images and generate the MIPAV XML required for imaging data submission to NDAR. Similar to clinical assessments, the NDAR data dictionary defines the field names and acceptable values for image metadata to which the MIPAV XML data file(s) must adhere. The data dictionary also has a sample imaging MIPAV XML file for reference. See the "Submitting Data to NDAR" section for more detailed information on imaging submissions.

     • NDAR Clinical Assessments & Imaging Codebook   [Last updated: Dec 19, 2008]
   • Genomics Data
     

     For Genomics data, NDAR has adopted the use of a set of templates for accepting various types of genomics data. See the "Submitting Data to NDAR" section for more detailed information on filling out the templates. The NDAR Genomics data dictionary defines the field names and acceptable values for the fields in the template files.

     • NDAR Genomics Codebook   [Last updated: Dec 19, 2008]
     • NDAR Genomics Templates (ngTemplates)
       • bioSamples.xls   [Last updated: Sep 15, 2008]
       • experiments.xls   [Last updated: Sep 15, 2008]
       • experimentSamples.xls   [Last updated: Dec 17, 2008]
       • protocols.xls   [Last updated: Dec 17, 2008]
       • reagents.xls   [Last updated: Nov 25, 2008]
       • subjectsHuman.xls   [Last updated: Dec 17, 2008]

5. Submit Data to NDAR

   NDAR has developed a Data Validation tool that simplifies the data submission process. Once data (Clinical Assessments, Imaging, or Genomics) are in the required NDAR format as described above, the validation tool will validate the data against the data dictionary to generate the data submission package. The data submission package is then submitted through the portal. The Data Validation tool is also accessible via the portal. See the following guide for more detailed instructions:

   • NDAR Data Validation and Submission User Guide   [Last updated: Jul 30, 2008]