Request Access

Info | NDAR Study | Federated Repositories

Summary information on the data shared in NDAR is available on the NDAR homepage without the need for an NDAR account.  For access to detailed human subjects data, you must be sponsored by an NIH recognized institution with Federal Wide Assurance 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 an institutional official with signature authority.

If you do not know your institution's signing official, contact us at ndarhelp@mail.nih.gov. Additional research staff from the same institution may be added to the Data Use Certification by completing the Senior/Key Person Profile (Collaborating Investigator section). There is no limit to the number of additional staff members who can be added to a data access request so 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. You may also send a scanned version of the completed Data Use Certification to ndarhelp@mail.nih.gov

Once completed, the request is reviewed by 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.

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