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

SEP 24, 2014 - SEP 25, 2014

NIMH Strategic Plan, Including the Implementation of RDoCdb and NDCT Mentioned in the 2014 Autumn Edition of Inside NIMH — NIMH Director, Tom Insel, M.D., discusses data-sharing expansion efforts of the NIMH Data Repositories in the 2014 Autumn edition of Inside NIMH.

SEP 24, 2014 - SEP 25, 2015

NIMH Director's Blog: From My Data to Mined Data — NIMH Director, Tom Insel, M.D., discusses genomic data sharing policies of the NIMH Data Repositories in the latest edition of the NIMH Director's Blog.

SEP 16, 2014 - SEP 25, 2014

New Grants Fund Cross-Lifespan Services Research for ASD — NIH-funded projects aim at improving access and timeliness of interventions are expected to submit data to NDAR.

AUG 29, 2014 - AUG 31, 2015

SfN Workshop Announced - Big Data Opportunities Using NIH/NIMH Data Repositories

Symposia Meeting

Date & Time: Thursday, November 13, 2014 9:30am - 4pm
Location: Carlyle Crescent, Alexandria, VA, 1940 Duke St., 2nd Floor
Sponsor Category: University/Non-Profit
Sponsored By: NIMH

Organizer/Moderator: Svetlana I Novikova, PhD

Registration: http://fs30.formsite.com/NDAR/BigDataOpportunities/index.html

The NIH established the National Database for Autism Research (NDAR) in 2008. Since then, de-identified human subjects research data on 77,000 research participants across hundreds of cognitive, diagnostic and clinical measures are now shared. Secured in the Amazon cloud, large datasets from over 8,000 exome sequences, 2,000 structural images exists (see NDAR Query) and event based fMRI, EEG, and eye tracking experiments make NDAR one of the largest data repositories in the neurosciences. Recently, the NIMH Research Domain Criteria (RDoC) and Clinical Trials (NDCT) initiatives have adopted the same data sharing platform. Together, these platforms provide new and emerging opportunities that previously could not have been considered. This symposium will help educate the neuroscience community on the best practices used to drive scientific discovery using these resources. Further, NIH program officers will present on how such big data scientific efforts are now being funded.

Contact:

Svetlana Novikova, PhD, NDAR
Email: novikovas@mail.nih.gov
Phone: 301.443.0212
Web: ndar.nih.gov

Dan Hall, MS, NIMH
Email: dan.hall@nih.gov
Phone: 301.467.0823
Web: ndar.nih.gov

AUG 01, 2014 - AUG 23, 2014

The National Institute of Mental Health (NIMH) Launches Web Services for the National Database for Clinical Trials (NDCT) and the Research Domain Criteria Database (RDoCdb) — Web services for the National Database for Clinical Trials (NDCT) and the Research Domain Criteria Database (RDoCdb) are now live.

MAY 12, 2014 - SEP 25, 2014

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 - SEP 25, 2014

NIMH to use NDAR model for Research Domain Criteria Database (RDoCdb) — The National Institute of Mental Health (NIMH) is looking to model the RDoCdb 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 RDoCdb 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.

Older Items

Older items can be found on the News Archive page.