About NDAR
Vision | Implementation | Federation | Sponsoring Organizations | NDAR Team | NDAR NewsVision
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:
- National Institute for Mental Health (NIMH)
- Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
- National Institute of Neurological Disorders and Stroke (NINDS)
- National Institute for Environmental Health Sciences (NIEHS)
- Center for Information Technology (CIT)
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
NDAR Technical Manager, Imaging Lead — Dr. Matt McAuliffe, CIT
Health Science Policy Analyst — Dr. Anne Sperling, NIMH
Principal Analyst, Genomics — Dr. Svetlana Novikova, NIMH
Principal Analyst, Outreach and Communication — Ms. Gretchen Navidi, NIMH
NDAR News
May 17-19, 2012
NDAR holds special presentations at the International Meeting for Autism Research (IMFAR) — Preregister for the NDAR, AGRE and the Autism Informatics Grid Training Session by contacting ndar@mail.nih.gov. Registration is limited to only 40 participants.
May 15, 2012
NDAR Data Release — Autism Spectrum Disorder (ASD) researchers can now access data from approximately 30,000 participants enrolled in ASD studies.
April 16, 2012
The Pediatric MRI Data Repository, 5th release is available through NDAR — New in this release are longitudinally-registered anatomic MRI data (images and derived volumetric measures), processed single-voxel MRS data which has been corrected for CSF voxel content, raw multi-voxel MRSI files, low resolution (3mm) diffusion tensor imaging (DTI) data, additional demographic measures, and revised biospecimen collection dates.
April 4, 2012
Dr. Evan E. Eichler publishes on his NDAR Collection — Dr. Eichler publishes on autism gene identification data from his NDAR Collection.
March 16, 2012
Data from Papers functionality added to the NDAR homepage — This new feature allows researchers to link data from papers to the descriptive and experimental data stored in NDAR. This functionality is now available on the NDAR homepage.
February 29, 2012
NDAR Releases Video Explaining GUID and the Value of Participating in Autism Research — NDAR produced a video to help explain the value of participating autism research and to provide a better understanding of the use and security of the Global Unique Identifier (GUID). Aimed at potential participants, the video is freely available to any researcher to help supplement the informed consent process.
February 22, 2012
Dr. Pat Levitt publishes the first NDAR Study — Dr. Levitt is the first researcher to link a publication to and publish an NDAR Study, which is relevant to his work on the Met Signaling System, Autism and Gastrointentional Dysfunction. The NDAR Study allows a researcher to define study cohorts, primary and secondary study measures, and data analysis methods.
January 23, 2012
Notice of Availability of One-Year Administrative Supplements to NIMH-supported Research for FY 2012 — The National Institute of Mental Health (NIMH) announces opportunities for investigators with active NIMH-supported research grants to request 1 year of supplemental funding in FY2012. NIMH has identified specific areas of interest in accordance with its goal of accelerating mental health research as described in the Institute's Strategic Plan.
December 23, 2011
NDAR Named One of the Top Ten Research Advances of 2011 — Thomas Insel, M.D., Director of the National Institute of Mental Health (NIMH) named the National Database for Autism Research as one of the top ten research advances of 2011.
December 12, 2011
The National Institutes of Health Announces the Federation of NDAR and AGRE Creating the Largest Source of Autism Research Data — A data partnership between the National Database for Autism Research (NDAR), and the Autism Genetic Resource Exchange (AGRE) positions NDAR as possibly the largest repository to date of genetic, phenotypic, clinical, and medical imaging data related to research on autism spectrum disorders (ASD).
October 15, 2011
Dr. David Hessl makes first publication on data in NDAR — Dr. Hessl is the first researcher to publish on data contained in his NDAR Collection, which is related to his work on the Aberrant Behavior Checklist and Fragile X Syndrome. Through PubMed, his NDAR Collection is directly linked to his publication.
October 5, 2011
The National Database for Autism Research (NDAR) Announces the First Published Paper Linking to Data Available in NDAR. The paper "Psychometric Study of the Aberrant Behavior Checklist in Fragile X Syndrome and Implications for Targeted Treatment" published in the Journal of Autism and Developmental Disorders became the first paper linked to data submitted in NDAR.
September 27, 2011
NDAR Awarded the Prestigious HHS Innovates Award by Secretary Sebelius — The HHSinnovates program was created as part of our Open Government efforts to celebrate innovation by employees of HHS. The program is aimed at building a culture of innovation at HHS through facilitating the exchange of innovative ideas throughout the Department. This contest seeks not only to recognize and reward good ideas but also to help promote them across the Department.
February 9, 2011
NIMH Shifts Focus to Molecular Origins of Mental Illness — To accelerate the development of personalized and preemptive treatments for those living with mental illness, the NIMH is shifting away from current-generation treatments and toward preclinical drug development and early-phase clinical pharmacology, according to the institute's director and a workgroup co-chair.
Older items can be found on the News Archive page.
This page was last updated: May 9, 2012
