Summary information on the data in NDAR is available on the NDAR homepage for public use.  For access to detailed human subjects data in NDAR, you must be sponsored by an NIH recognized institution and have a research related need to access NDAR data.  NDAR federated repositories have their own access requirements.

To request access to NDAR shared data, an investigator must complete a Data Use Certification signed by the investigator and the signing official at the investigator's institution with NIH federal wide assurance.

If you do not know your institution's signing official, contact us at ndarhelp@mail.nih.gov.  Researcher contact information should be completed for anyone else in your lab needing access. Only one request is needed for your entire lab.

The Data Use Certification must be scanned and uploaded when creating an account or in the "My Profile" section of the NDAR portal for those who have NDAR accounts.

Once completed, the request package is then sent to the Data Access Committee (DAC) established to oversee access to the NDAR shared data.  Refer to SOP-04 Data Access Permission Request for the entire procedure.

Those approved will have access to NDAR for one year after which you will need to reapply.  Those publishing are required to acknowledge NDAR as defined in the Data Use Certification.  Additionally, the sharing of an NDAR Study is strongly encouraged to provide proper attribution to those who initially collected the data.

NDAR Study

A Collection in NDAR is a container for data submitted by a lab or project (see Data from Labs).  The NDAR Study allows data to be organized specific to how it is presented in a publication (see Data from Papers), where you can define cohorts, associate subjects to those cohorts, and specify outcome measures and results.  When shared, the NDAR Study is linked to a publication allowing those that review the publication to have direct access to the data.  All subjects in NDAR, or an NDAR federated repository, may be used to create an NDAR Study as long as the underlying data is shared.

To create an NDAR Study, simply select "Study" from within the NDAR portal, fill in general information about the Study (title, investigators, etc.) and create your cohorts.  Then, go to the NDAR query tool, select subjects and associate them to the appropriate cohort.  Next, identify outcome measures, which will be used for query, provide a result - which is usually the publication - and share.  Once shared, your study will appear in the Data from Labs section of the NDAR website, and those with access to NDAR will be able to query the data specific to your publication.

For help on defining an NDAR Study, contact us at ndarhelp@mail.nih.gov

Federated Repositories

The following repositories are now accessible through NDAR.

• Autism Genetic Resource Exchange (AGRE) - A genomics data repository and family registry of over 1000 multiplex and simplex families affected by ASD.
• Autism Tissue Program - A post-mortem brain tissue program.
• Interactive Autism Network (IAN) - A database containing 30,000 individuals and their families with an ASD diagnosis who have voluntarily submitted information of interest to scientists.
• The Pediatric MRI Data Repository - A semi-longitudinal study containing rich phenotypic and imaging data from more than 500 typically developing children, from birth to young adulthood.

For a detailed description of NDAR's federation architecture, see Sharing Heterogeneous Data: The National Database for Autism Research by Hall et al. (2012).