Over the past decade, research addressing all aspects of autism spectrum disorders (ASD) has expanded significantly due to the greater availability of resources, scientific progress and research opportunities. Concurrently, there has been a rapid expansion in the acquisition and use of the underlying research data as researchers increasingly rely on computation, bioinformatics, and information technologies to help them perform their research.
As tools and techniques enable researchers to access and analyze greater amounts and more varied types of information, the National Institutes of Health (NIH) has recognized the research potential in combining datasets from multiple existing data resources to answer autism's most challenging questions.
The NIH has developed the National Database for Autism Research (NDAR) as a secure bioinformatics platform for scientific collaboration around autism spectrum disorder (ASD). Its objectives are to:
NDAR is a robust resource designed to help the ASD research community to accelerate discoveries that will improve the lives of people with autism and their families.
NDAR has been designed as research portal that links data, supporting documentation, publications, and grants information relevant to autism research. NDAR provides access to data stored in a central repository (the NDAR Central Repository) as well as data from federated sources such as the NIMH Genetics Repository, AGRE and IAN.
NDAR's data federation capability provides a significant benefit to the autism research community: a single point of access to high volume research data across multiple repositories. NDAR's data infrastructure is designed to allow researchers to query federated data resources and data resident in the NDAR Central Repository using the same interface.
In this way, NDAR provides a platform for collaboration among investigators with the capability to define sub-populations from these datasets in support of a hypothesis.
The NDAR Collection
An NDAR Collection acts as:
Investigators can create an NDAR Collection and submit their data to be stored in the NDAR Central Repository. All data contributed to NDAR initially will remain private to the owner of the NDAR Collection, who can assign permissions to other NDAR account holders to access the data. Investigators can share data either broadly with the ASD research community, or with specific individuals through NDAR's Ongoing Study capability.
Data from research participants are assigned a Global Unique Identifier (GUID), which is a universal subject ID that protects personally identifiable information (PII). Using the GUID, NDAR can bring together multiple types of data collected from a single participant, regardless of where and when that data was collected.
The NDAR Study
An NDAR Study contains no research data. Instead, it references research data available in NDAR Collections. An investigator can create an NDAR Study, query the NDAR Collections, and save references to the research data through the GUID. The graphic below illustrates this relationship.
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Once investigators have saved the data references into the NDAR Study, they can permit specific individuals to access the Study for review and analysis. Investigators are encouraged to review NDAR's policy on data access to learn how to gain access to data from NDAR Studies and Collections.
The NDAR team is working with a number of autism-relevant data repositories that have agreed to federate and make their data available through NDAR:
The Pediatric MRI Data Repository will be the first in this series to be made available to ASD researchers, in the spring of 2010. At that time, investigators will be able to perform a single query in the NDAR portal to view results across multiple datasets.
NDAR is sponsored by the National Institutes of Health (NIH), the nation's medical research agency, and is supported by the following NIH Institutes and Centers:
NDAR supports the aims of the Interagency Autism Coordinating Committee (IACC), which coordinates all efforts within the agencies of the U.S. Department of Health and Human Services (HHS) concerning autism spectrum disorders (ASD).
If your research site is interested in federating with NDAR, please contact us at ndar@mail.nih.gov and refer to SOP-06 Establishment of a Federated Data Resource for an introduction to the process for federation.
The NDAR Team provides vision, direction, subject matter expertise and technical leadership for the implementation of the NDAR research portal.
NDAR Director — Dr. Michael Huerta, Associate Director NIMH
NDAR Manager — Mr. Dan Hall, NIMH
NDAR Technical Manager — Dr. Matt McAuliffe, CIT
Health Science Policy Analyst — Dr. Anne Sperling, NIMH
Genomics Lead — Dr. Lynn Young, CIT
Principal Analyst for Clinical Assessments — Ms. Gretchen Navidi, NIMH
Web Programming — Mr. Eric Stanton, NIMH
Outreach Coordinator — Ms. Kristin Mead, NIMH
This page was last updated: Nov. 5 2009
