Standards

Subject GUIDs | Clinical and Phenotypic Data | ACE Common Measures | Imaging | Genomics Definition | Data Sharing Regimen | Query and Download

Subject GUIDs

The GUID is a universal subject ID that allows researchers to share data specific to a study participant without exposing personally identifiable information (PII) and at the same time be able to match participants across labs.

Required fields are Date of Birth, Legal Name at Birth, Gender, and Community of Birth. It is very important to include the information as it appears on the birth certificate, otherwise, a subject mismatch will occur if the research subject enrolls in future autism research studies.

For researchers interested in understanding how to use the GUID in their labs, refer to the following:

For those consenting to share their data with NDAR, you may be interested in the following:

The GUID system was conceived by the Simons Foundation Autism Research Initiative (SFARI) and implemented by NDAR.

Simons Foundation Autism Research Initiative logo

Clinical and Phenotypic Data

NDAR supports an unlimited number of clinical, demographic, and phenotypic data associated with autism human subjects research.  Currently over 250 data structures are defined in the NDAR Data Dictionary.  To ensure harmonization, all data submitted to NDAR must conform to this definition.  See the steps to data sharing for more information.

Researchers are encouraged to extend these definitions using the NDAR data dictionary tool by providing NDAR with any new assessments.  Simply send new definitions of your data to ndarhelp@mail.nih.gov in a format similar to the following example.  NDAR staff will then curate the definition and make it available to the research community for data submission.  See the NDAR Data Dictionary for more information.


ACE Common Measures

The following are measures defined by the NIH funded Autism Centers of Excellence (ACE).  Refer to the ACE Common Measures Data Dictionary for detailed specifications.  Currently, the following measures are now being collected by this program:


Imaging

NDAR supports many different types of imaging formats.  For structural MRI, resting state fMRI, DTI, and spectroscopy, use the NDAR Image Data Definition.  This definition expects certain header information to be provided.  Optionally, you may consider using the NDAR Imaging Tool (see tutorial) that is able to read most imaging formats and automatically extract that data.


Genomics and -omics Definition

NDAR has created a genomics definition tool for investigators to use for raw genomics data submission.  The tool is designed to make genomics submissions simple by capturing the information associated with an experiment.  See Defining an -OMICs experiment in NDAR

The steps for genomics submission are:

  1. Login to NDAR, select your Collection and choose to "Edit Collection."
  2. Find the Supporting Documentation section and choose "Create Experiment" to enter the Genomics Experiment Definition (GED) tool.
  3. Give your Experiment a name and select the nine (9) attributes specific to your experiment:
    1. Molecule and Sub-molecule
    2. Experiment Technology
    3. Vendor and Platform
    4. Extraction Protocols and Kits
    5. Processing Protocols and Kits
    6. Analysis Software
    7. Equipment
  4. Once the experiment is saved, you will be returned an Experiment_ID, which is needed for your genomics submission package.
  5. After completing the experiment definition, the two (2) files required for package submission are:
    1. Genomic_Sample - Experiment ID needs to be included along with links to the absolute paths of the genomic files.
    2. Genomic_Subject - Definition of GUIDs and other information about the subject.

Data Sharing Regimen

NDAR has outlined a schedule that includes separate timelines for "descriptive data" and "experimental data," as defined in the Data Sharing Policy.  This policy is included in the terms and conditions of most autism-related grant awards.  Please contact ndarhelp@mail.nih.gov if more specific guidance is needed.


Query and Download

When access to NDAR is granted, you may then select Query from within the portal to access detailed research data within NDAR.  You may query by Collection, Study, Data Structure or Subject (e.g. GUID).  From your results, you are able to select data for download or for associating subjects to an NDAR Study.

While the query tool provides robust capabilities to select data, the types of data available have made it difficult to query across different data structures, laboratories, and federated repositories.   To meet this need, NDAR has summarized the data within NDAR (and soon will include NDAR federated repositories) allowing investigators to select subjects based upon phenotype, sub-type, or attribute.  These categories are intended solely for the query and download of data (see methods).  Once subjects are selected (by age in months) from this summary interface, NDAR will enable download.  Initially, this will be done through the user interface. Soon it will be available through an authenticated web service, allowing integration into computational pipelines available for community use.   Contact us at ndarhelp@mail.nih.gov for more information on our approach or collaboration opportunities.