About NDAR

Vision | Implementation | Federation | Sponsoring Organizations | NDAR Team | NDAR News (2014, 2013, Older Items)

Vision

NDAR is an extensible, scalable informatics platform for ASD relevant data at all levels of biological and behavioral organization (molecules, genes, neural tissue, behavioral, social and environmental interactions) and for all data types (text, numeric, image, time series, etc.). NDAR was developed to share data across the entire ASD field and to facilitate collaboration across laboratories, as well as interconnectivity with other informatics platforms. Sharing data, associated tools, and methodologies, rather than just summaries or interpretations of them, can accelerate research progress by allowing re-analysis of data, as well as re-aggregation, integration, and rigorous comparison with other data, tools, and methods. This community-wide sharing requires common data definitions and standards, as well as comprehensive and coherent informatics approaches.

The NDAR team has developed and implemented several tools for data definition, standardization and validation in order to help researchers to adopt community data standards across all projects and research institutions. NDAR's Data Dictionary, developed after thorough analyses and input from the whole ASD research community, now comprises over 400 pre-defined data structures. NDAR's Data Dictionary Tool allows researchers to define their own data structures and operates with the NDAR's Validation Tool to ensure the data quality. NDAR requires only minimal adjustments to the way raw data is entered, and multiple web tutorials and demos are available for researchers willing to submit their data.


Implementation

NDAR is a secure informatics platform for the ASD research community that encompasses the full range of data collected by investigators and combines technologies and policy regimes in order to:

  • define explicitly the nature of the data and how it was collected
  • allow re-aggregation and reanalysis of data
  • assure confidentiality of research subjects
  • promote scientific collaboration
  • provide a convenient schedule for the sharing of descriptive and experimental data
  • promote standardization and harmonization of informatics approaches used within NDAR and across the ASD research community

NDAR combines the function of a data repository, which holds genetic, phenotypic, clinical, and medical imaging data, and the function of a scientific community platform, which defines the standard tools and policies to integrate the computational resources developed by scientific research institutions, private foundations, and other federal and state agencies supporting ASD research. Furthermore, NDAR is working to develop the means to connect relevant repositories together through data federation.


Federation with Other Important Data Repositories

The concept of federated repositories enables data resident in NDAR to be connected with other major public or private autism databases located elsewhere. When such resources are federated, investigators are able to access data, tools, and information across all federated resources from a single point of entry.

The technical architecture of NDAR provides this linkage, regardless of their location or ownership, and in ways that respect the policies, authorization, and implementations of the particular institutions and data resources.

NDAR has or is in the process of federating with the following repositories:

  • Pediatric MRI Data Repository — stores rich phenotypic and imaging data from more than 500 typically developing children, from birth to young adulthood
  • The Autism Tissue Program — a fully funded science program of Autism Speaks that is committed to promoting high quality brain tissue acquisition, processing, stewardship, thorough supportive clinical data acquisition and distribution for research
  • The Autism Genetic Resource Exchange — an electronic data repository housing information from more than 1,000 families affected by ASD. AGRE was created by the advocacy group Cure Autism Now and is currently supported by Autism Speaks.
  • The Interactive Autism Network — an online project of the Kennedy Krieger Institute with funding from Autism Speaks, which contains data on 30,000 individuals and families with an ASD diagnosis who have voluntarily submitted information of interest to scientists.

If your research site is interested in federating with NDAR, please contact us at ndarhelp@mail.nih.gov and refer to SOP-06 Establishment of a Federated Data Resource for an introduction to the process for federation.


Sponsoring Organizations

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 ndarhelp@mail.nih.gov and refer to SOP-06 Establishment of a Federated Data Resource for an introduction to the process for federation.


NDAR Team

NDAR Director — Dr. Greg Farber, Director Office of Technology Development and Coordination
NDAR Manager — Mr. Dan Hall, NIMH
Principal Scientist — Dr. Svetlana Novikova, NIMH
Operations Manager — Mr. Brian Koser, NIMH
Principal Analyst, Outreach and Communication — Ms. Gretchen Navidi, NIMH


NDAR News

Recent news articles are also available from the NDAR News web feed.

2014

MAY 12, 2014 - MAY 12, 2015

Dr. Farber discusses the NIH BRAIN Initiative with NBC4 Washington — Dr. Gregory K. Farber speaks with NBC4 Washington's Doreen Gentzler about the NIH BRAIN Initiative aimed at expanding our understanding of the human brain.

MAY 01, 2014 - MAY 01, 2015

NIMH to use NDAR model for Research Domain Criteria (RDoC) Data — The National Institute of Mental Health (NIMH) is looking to model the RDoC data sharing infrastructure similar to NDAR. In an article published in the American Journal of Psychiatry, Thomas R. Insel, M.D., NIMH Director, explains the RDoC approach to classifying mental disorders and how NDAR has provided a useful example on what is needed.

APR 16, 2014 - MAY 16, 2014

NDAR Mentioned in UC San Diego Press Release — NDAR was recently mentioned in a UC San Diego press release relating to the usage of splice variants to uncover associations among autism genes.

APR 11, 2014 - APR 28, 2014

Join us for Query by Concept Webinar in April — 'NDAR has collaborated with a team at Harvard Medical School, lead by Alexa McCray to implement a search capability based on the phenotype ontology defined in the Modeling the Autism Spectrum Disorder Phenotype paper. Join us for a discussion on how to use and extend this useful method querying autism data.

'

FEB 05, 2014 - APR 07, 2014

EEG, fMRI, Eye Tracking Experiment Definition Released — NDAR has defined the experimental parameters for event/evoked response data making these data more useful for sharing. Beginning in July, these data are will be expected using this definition. Register to attend one of our free webinars which will review the preparation of this neuro-signal recording data for submission to NDAR.

FEB 05, 2014 - APR 07, 2014

Enhanced Query Capabilities — NDAR Query has been extended which allows users query and download data based upon any combination of data elements defined in the autism data dictionary. For more information and to watch an overview of NDAR¿s query capabilities and query computational results, register for one of our free webinars. We will also cover the process to request access to NDAR shared data. Use the link for your selected session to register.

2013

JUN 20, 2013 - JAN 27, 2014

NIMH Director's Blog on Open Data — Please visit Dr. Tom Insel's blog for his latest post on open data.

JUN 13, 2013 - FEB 05, 2014

NDAR Cloud Computation Capability — Rich datasets (e.g., FASTQ and brain imaging) are stored and protected in object-based storage (Amazon S3) enabling parallel data download through NDAR's Download Manager. NDAR now supports the creation of MySQL databases in the Amazon Cloud which will be hosted by NDAR for 15 days, or longer as needed. These databases, called miNDARS (miniature NDARs), will contain a table for each data structure in a package. Files are granted read-only access to NDAR's S3 objects, and the reference to those objects are provided within the tables that have associated files (e.g., image03 and genomics_sample03). By providing these databases, NDAR envisions real-time computation against rich datasets that can be initiated without the need to move the objects. A new data structure category, evaluated data, has also been created. Tables for these structures will be created for each miNDAR, allowing computational pipelines to write any analyzed data back to the miNDAR database allowing NDAR to make this data available - when appropriate - to the general research community.

Following this approach, NDAR is moving from a "store once, download many" approach to an architecture where computation is moved and performed in place.

MAY 10, 2013 - FEB 05, 2014

Updates to NDAR Data Sharing Policy — The recent updates to the NDAR Data Sharing Policy clarify that analyzed data are expected to be submitted at the time of publication. Analyzed data include: results; data from custom or proprietary clinical measures; final data and images derived from processed images; sufficient supporting documentation to enable efficient and appropriate use of the data; and all other de-identified research data acquired through the supported research.

The updates also include the expectation for researchers to associate data deposited in NDAR with their publications using the NDAR Study feature.

The Data Sharing Policy can be found on the website under the Data Sharing Regimen section. If you have any questions, please contact us at ndarhelp@mail.nih.gov.

MAY 01, 2013 - FEB 05, 2014

NDAR Sponsors the OHBM 2013 Hackathon — The National Database for Autism Research (NDAR) is a secondary sponsor of the Organization for Human Brain Mapping (OHBM) 2013 Hackathon, a meeting-long analysis and resource building competition designed to accelerate the connection between open neuroscience and cloud computing. This event will be held as a part of the OHBM 2013 Meeting this June in Seattle.

The hackathon will include a meeting-long venue on the main poster/exhibit floor space and prepared cloud-accessible data and software. These resources will be available to participants beginning two months ahead of the meeting, with in-kind support from Amazon Web Services in the form of $100 in cloud computing credits.

The contest is organized around three challenges; two are pre-announced and open to work prior to the meeting. The last challenge will be announced at the time of the meeting. Challenge details are available on the OHBM website. Cooperative hackathon activity outside of the contest is also encouraged.

The Hackathon is open to everyone; however, in order to access the shared data in NDAR you must first submit a Data Use Certification form. Please contact the NDAR Help Desk at ndarhelp@mail.nih.gov if you would like to request access.

For more information and to register, please visit the Hackathon website.

Older Items

Older items can be found on the News Archive page.