About NDAR
Vision | Implementation | Federation | Sponsoring Organizations | NDAR Team | NDAR News (2013, 2012, 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:
- 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)
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
2013
JAN 23, 2013
Announcing the Advancing Autism Discovery Users Group — The National Database for Autism Research is pleased to announce the Advancing Autism Discovery Users Group. This two-day workshop will be held April 22-23 at the Neuroscience Center, 6001 Executive Boulevard, Rockville, MD 20852. NDAR now contains harmonized -omics, imaging, and phenotypic data on over 44,000 research subjects. Workshop attendees will be provided instruction on how to use NDAR to advance discovery, provide short-term feedback on how NDAR can improve to meet scientific needs, and develop a user group to continue feedback for the next year.
This workshop is free and open to all researchers with an active NDAR data access agreement with attendance limited only by the space available. The workshop agenda and additional information is available at the link below. Individuals who plan to attend the workshop must register by March 1, 2013. For more information, please contact ndarhelp@mail.nih.gov.
Registration Form
Agenda
2012
NOV 20, 2012
NDAR Mentioned in November 1st Issue of Nature — The National Database for Autism Research was mentioned in "Brain scans need a rethink" by Ben Deen and Kevin Pelphrey, published in the November 1st, 2012 issue of Nature. Click here to read the article.
NOV 09, 2012
omicSEARCH and Resolve Subject Identifiers Available For Use — omicSEARCH allows researchers to filter and download subject data based upon experiment (e.g. molecule, type of sample, technology, and platform) and/or alteration type (e.g. SNP, CNV, SNV), affected region, chromosome, cytoband, etc., returning specific alterations. Selected alterations can then be applied - via Show results - against participant data, including phenotypic (see methods) categories and imaging results in NDAR. Next month, authorized users will be able to download.
The autism community has standardized on the NDAR GUID for cross project subject identifiers, however many other identifiers remain in use. Resolve Subject Identifiers (found under Harmonization Tools) was designed to resolve these identifiers to the appropriate GUID/Subjectkey and ensure that no duplicate subjects exist in any retrieved data. Instructions on how to associate other repositories' identifiers (e.g. SFARI, AGRE, ATN) with the GUID are also provided.
SEP 28, 2012
First Publication Using NDAR Data Now Available — The first ever peer-reviewed paper derived from NDAR data has been published in the Journal of Intellectual Disability Research. The paper, entitled Predictors of self-injurious behaviour exhibited by individuals with autism spectrum disorder, assesses whether impulsivity, hyperactivity, negative affect, severity of sterotypy, intellectual functioning, or severity of autism symptoms predicted the severity of self-injurious behavior (SIB).
SEP 28, 2012
NDAR Announces the Autism Genome Project (AGP) Data Release — As of September 2012, some Autism Genome Project data is now available to qualified researchers through the National Database for Autism Research (NDAR). The AGP dataset in NDAR includes raw genotypic intensity data and genotype calls.
The AGP is a study of over 5,000 strictly defined ASD subjects to understand the genetic and phenotypic heterogeneity in autism spectrum disorders (ASDs). It allowed for the discovery of key features of the ASD genomic architecture as well as new susceptibility loci, developing a course for future ASD research. The project was funded by the NIMH, NICHD, NINDS, NCCR, and Autism Speaks.
MAY 24, 2012
NDAR Publication on Sharing Heterogeneous Data — Dan Hall, Dr. Michael Huerta, Dr. Matthew McAuliffe and Dr. Gregory Farber publish "Sharing Heterogeneous Data: The National Database for Autism Research" article in Neuroinformatics. The publication describes the basic structure of NDAR, the strategies NDAR has used to overcome the issues of data heterogeneity, solutions to some of the problems in making data from human subjects widely available to the research community, and the results of these efforts so far. Several ways to use NDAR are also outlined in this paper.
FEB 29, 2012
NDAR Releases Video Explaining GUID — 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.
Older Items
Older items can be found on the News Archive page.
