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Standards

GUIDs | Clinical Assessments | Imaging | Genomics
To be an effective research community resource, NDAR has adopted a number of important standards and conventions.

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GUIDs

• GUID User Manual
• Request free GUID custom client software

One of the most important standards NDAR supports is the NDAR Global Unique Identifier (GUID). The GUID is a universal subject ID that allows researchers to share data specific to a study participant without exposing personally identifiable information (PII).

Using the GUID, NDAR can bring together multiple types of data collected from a signle participant, regardless of where and when that data was collected.

• Full legal name of participant at birth (as it appears on the birth certificate)
• Participant date of birth
• Gender
• Town or municipality of birth (as it appears on the birth certificate)

The GUID is generated using a free software application installed at the research site. The software converts the four items from the birth certificate into a hash code, which is then transmitted to NDAR. The personally identifiable information (PII) about each participant remains at teh research site. NDAR then converts the hash code into a GUID and sends it back to the research site for use.

Clinical Assessments

• NDAR Clinical Assessments and Imaging Data Dictionary [ PDF 3.3MB ] Last updated: May 19, 2009

NDAR has adopted the Clinical Data Interchange Standards Consortium (CDISC) Operational Data Model, a vendor-neutral, platform-independent data standard for clinical research.

NDAR supports clinical data submissions in XML or Microsoft Excel's tab delimited or comma separated value (CSV) formats.

The NDAR Clinical Assessments and Imaging Data Dictionary contains the field names, description, field type and range values for the following assessments:

1. Autism Diagnostic Observation Schedule – Modules 1 – 4 (2001) -- (1)
2. Autism Diagnostic Interview – Revised (2003) -- (1)
3. CHARGE Family Characteristics Questionnaire -- (1)
4. CHARGE Physical Exam -- (1)
5. Karyotype -- (1)
6. Modified CHARGE Family Medical History -- (1)
7. CHARGE Medical History -- (2)
8. NIMH Medical History Questionnaire -- (2)
9. Vineland II - Survey (2005) -- (3)
10. Vineland II - Parent and Caregiver Rating (2005) -- (3)
11. Aberrant Behavior Checklist - Community
12. PDD Behavior Inventory – Parent Rating
13. Social Communication Questionnaire – Lifetime
14. Social Communication Questionnaire – Current
15. Social Responsiveness Scale - Current (2005)
16. Modified Checklist for Autism in Toddlers (1999)
17. MULLEN Scales of Early Learning - AGS Edition (1995)
18. Peabody Picture Vocabulary Test – Form A (Third and Fourth Edition)
19. Peabody Picture Vocabulary Test – Form B (Third and Fourth Edition)
20. Differential Ability Scales – Preschool
21. Differential Ability Scales – School Age
22. Wechsler Intelligence Scale for Children - IV (2005)
23. Wechsler Abbreviated Scale of Intelligence (1999)
24. Wechsler Adult Intelligence Scale – IV

Note: Autism Centers of Excellence (ACE) Common Measures include the assessments designated with a (1) above, either the Charge Medical History or the NIMH Medical History Questionnaire [designated by (2) above], either of the Vineland II assessments [designed by (3) above], and an IQ assessment.

Imaging

• NDAR Clinical Assessments and Imaging Data Dictionary [ PDF 3.3MB ] Last updated: May 19, 2009
• Medical Image Processing, Analysis, and Visualization (MIPAV) Application

NDAR supports the receipt of raw brain images in DICOM format. NDAR also supports processed images in a variety of formats including DICOM, MINC 1.0 and 2.0, Analyze, NIfTI-1, AFNI and SPM. If you are using a different file format, please contact ndar@mail.nih.gov to let us add it to our list of supported standards.

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 for 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.

The NDAR Clinical Assessments and Imaging Data Dictionary contains the metadata definition for imaging and defines the field names, description, field type and range values for image metadata to which the MIPAV XML data file(s) must adhere. A sample imaging MIPAV XML file is available for reference.

Genomics

• NDAR Genomics Data Dictionary [ PDF 3.3MB ] Last updated: May 19, 2009

NDAR supports the submission of SNP and gene expression microarray. NDAR also stores descriptions associated with these data such as pedigree, biological samples, experiment design, experiment samples, reagents, and protocols. Note that NDAR does not store any specimen or samples, but may provide reference data for the storage location.

For Genomics data, NDAR has adopted the use of a set of templates for accepting various types of genomics data. The NDAR Genomics Data Dictionary defines the field names and acceptable values for the fields in the template files. The following Templates have been adopted to define a genomics data submission:

• bioSamples.xls [ 40 KB ] Last updated: Sep 15, 2008
• experiments.xls [ 40 KB ] Last updated: Sep 15, 2008
• experimentSamples.xls [ 40 KB ] Last updated: Dec 17, 2008
• protocols.xls [ 40 KB ] Last updated: Dec 17, 2008
• reagents.xls [ 40 KB ] Last updated: Nov 25, 2008
• subjectsHuman.xls [ 40 KB ] Last updated: Dec 17, 2008