539:(PII) uses the GUID Tool to create a unique identifier for each subject in their study. Although a GUID is based on PII, a subject's PII never leaves the local research site. The GUID Tool requires basic information typically found on a birth certificate such as first name at birth, last name at birth, date of birth, gender at birth and city/municipality of birth which do not change throughout an individual's life. A one-way hash code sequence is then generated based on this input. The GUID Tool transmits the encrypted codes to NDAR. The submitted one-way hash code sequence is compared to other sequences previously submitted. If that sequence has already been registered and has an associated GUID already identified, then the same GUID will be returned to the researcher. If the sequence has not been previously registered, a new GUID is created and returned to the researcher. The GUID for a subject is the same regardless of the location or time where it is generated. If the same subject enrolls in another investigator's project or provides a biological specimen for a repository, the same information from his or her birth certificate is entered into the software by the second investigator and the same GUID is generated. Data are always submitted to NDAR in association with a GUID, and the data in NDAR are indexed by the GUIDs. In this way, data from a de-identified individual subject can be aggregated, tracked and linked across projects, time, databases, and biobanks allowing for a more complete picture of the subject.
598:
investigators receiving NIH funding. Descriptive (raw) data are expected to be submitted biannually in
January and July, and includes non-proprietary behavioral and diagnostic data. Examples include standard clinical assessments, family medical history, demographics, unprocessed images, and genomic data. Making this information available early in the research process allows other investigators to understand the general characteristics of the participants enrolled. Experimental (analyzed) data are expected to be submitted within 12 months after accomplishment of each primary aim or objective (or set of interdependent aims or objectives) of the supported research, or at the time of publication of the results of the primary aim(s), whichever occurs first. Examples include outcome measures, analyzed genomics data, results from image analysis, and volumetric data.
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and/or data stored at federated repositories, after the data are made public. To gain access to that data, an investigator must obtain NDAR data access privileges. By default, all data contained in NDAR has passed data validation ensuring that all research participant data has an NDAR GUID, conforms to the NDAR data standard, and meets standard value constraints. Beginning with the
January 2011 submissions, NDAR developed and implemented automated quality procedures that are run against all incoming data to check for a variety of potential data discrepancies such as duplicate data, uniformity of gender, age consistency across measures, and scoring errors on a number of measures. Not only will the new QA procedures make NDAR-residing data of higher quality, but will increase data accuracy across each individual laboratory and project.
459:(CIT). The goal of NDAR is to provide a shared common platform for data collection, retrieval, and archiving to accelerate the advancement of research on autism spectrum disorders. The largest repository of its kind, NDAR makes available data at all levels of biological and behavioral organization for all data types. As of November 2013, data from over 90,000 research participants are available to qualified investigators through the NDAR portal. Summary information about the available data is accessible through the NDAR public website.
351:
483:, and other federal agencies on the needs and opportunities for autism research. The IACC Strategic Plan was designed to detail research opportunities centered on the six most pressing questions facing those affected by autism and links them to specific research efforts. In 2009, the plan was finalized and submitted to the Secretary of the Department of Health and Human Services; a seventh question related to infrastructure and surveillance needs was added to the plan in 2010.
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guarantee the consistency of raw experimental data, while simplifying the data definition for submission and aggregation across federated repositories. The predefined set of parameters includes attributes specific to each experiment (such as molecule and sub-molecule), experiment technology, vendor and platform, extraction protocol and kit, processing protocol and kits, analysis software, equipment.
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627:(IAN). This federation allows the data to be kept in their respective locations while enabling users to search across the databases simultaneously. These repositories all use the NDAR GUID as well as common data definitions. NDAR is currently finalizing a federation agreement with the Simons Foundation.
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Investigators working on autism-related projects, regardless of their funding source, are strongly encourages to submit any type of autism-related data generated in their laboratories. After extensive consultations with the research community, NDAR has established a two-tiered submission strategy for
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Researchers confirm that their data conforms to the existing definitions by using the
Validation Tool. The Validation Tool ensures that naming conventions are defined, GUIDs are properly registered, and the reported data are consistent with the value ranges defined in the dictionary. NDAR requires
486:
NDAR was developed by the NIH with the goal of improving sample sizes and enabling researchers to share data for increased analyses. NDAR was already in the process of being developed when the seventh question of the IACC Strategic Plan was added. Question 7, Objective H of the IACC Strategic Plan
567:
After thorough analyses of functional genomics acquisition and storage criteria as well as a review of the needs of the research community, NDAR staff developed a tool to simply and clearly define the relationship between samples and data files. A predefined set of parameters was built that would
526:
The two key components that form the basis of NDAR are the Global Unique
Identifier (GUID) for research subjects and the researcher-defined Data Dictionary to describe experiments. This platform requires that common data definitions and standards, as well as comprehensive and coherent informatics
501:
The NDAR Implementation Team (NIT) is one of the groups providing direction on NDAR, specifically data submission and access, in order to promote consistent participant protections. The team is composed of program staff representing
Institutes and Centers with autism research in their portfolios.
606:
NDAR's
Ongoing Study capability allows investigators to work collaboratively on research studies in progress; sharing data, tools, and standards through the NDAR portal before they are shared with the rest of the ASD community. Qualified researchers can also request access to data stored in NDAR
659:
The NDAR Study allows researchers to record basic information about the cohort, measures, analysis, and results of a study, linking to data contained in NDAR as well as the resulting publication. This tool allows others to replicate results and understand the data analysis methods. NDAR data is
554:
NDAR has established a data dictionary with over 300 clinical, imaging, and genomic research definitions which were created in close collaboration with the ASD research community. To submit data to NDAR, researchers are required to format their data in accord with an existing data definition or
498:, the Director of NIMH, oversees NDAR and its implementation and participates on a Governing Committee responsible for the ongoing management and stewardship of NDAR. This committee includes several other NIH Institute and Center directors or their designees.
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and SPM. Images could be visualized using NDAR's built-in image registration and visualization tool . Collaborations are planned with prominent ASD researchers in order to define data structures and develop standardization tools for functional neuroimaging,
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emphasizes the creation of mechanisms to specifically support the contribution of data into NDAR from 90 percent of newly initiated projects regardless of funding source, and the linking of NDAR with other existing data resources by 2012.
2020:
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minimal adjustments to the way raw data are entered, and multiple web tutorials and demos are available for researchers willing to submit data. All data contributed and shared must pass validation before they are submitted.
1300:
505:
The Autism
Informatics Consortium (AIC) was launched in 2011 with the goal of accelerating scientific discovery by making informatics tools and resources more useful to autism researchers. Current members include
479:(IACC), a federal government advisory panel charged with developing and annually updating a Strategic Plan for ASD research. This plan provides a blueprint for autism research that is advisory to Congress, the
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475:(CAA) of 2006 (P.L. 109–416). Through this Act, Congress intended to rapidly increase and improve coordination of scientific discovery in ASD research. The CAA mandated the creation of the
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The NDAR GUID is a subject identifier used to protect the confidentiality of a research subject. When submitting data, an investigator who has appropriate access to a subject's
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define new data definition which will be available for use by other researchers. As of May 2012, NDAR contains over 35,000 discrete data elements.
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546:. It has become the standard as a patient identifier for autism research and serves as a model for similar standards in other research areas.
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713:"Cure Autism Now and Autism Speaks Applaud Approval of the Combating Autism Act by United States House of Representatives"
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NDAR is linked to the following federal data repositories providing a wealth of information in one central location: the
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435:(ASD) investigators. The project was launched in 2006 as a joint effort between five institutes and centers at the
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format, as well as processed images in variety of formats, including DICOM, MINC 1.0 and 2.0, Analyze, NIfTI-1,
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The GUID is the result of a collaboration between NDAR, the Simons
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2021:
Everybody Is
Different: A Book for Young People Who Have Brothers or Sisters With Autism
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papers; readers are able to easily access the NDAR data from PubMed using this feature.
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Hall, Dan; Huerta, Michael F.; McAuliffe, Matthew J.; Farber, Gregory K. (2012).
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approaches, be developed for and with the involvement of the research community.
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It may require cleanup to comply with
Knowledge's content policies, particularly
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771:"Sharing Heterogeneous Data: The National Database for Autism Research"
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NDAR Federation Creates Largest Source of Autism Research Data to Date
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Sharing Heterogeneous Data: the National Database for Autism Research
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195:. Statements consisting only of original research should be removed.
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NIH Funds New Program to Investigate Causes and Treatment of Autism
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NDAR currently supports the receipt of unprocessed brain images in
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Freaks, Geeks, and Asperger Syndrome: A User Guide to Adolescence
427:(NDAR) is a secure research data repository promoting scientific
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In response to the heightened societal concern over ASD, the
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Researchers debut unique identifiers for study participants
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NDAR is federated with four other private databases- the
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National Institute of Child Health and Human Development
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Autism-related organizations based in the United States
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Aspergirls: Empowering Females with Asperger's Syndrome
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The Accidental Teacher: Life Lessons from My Silent Son
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National Institute of Neurological Disorders and Stroke
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Svetlana Novikova, Ph.D. (Principal Analyst, Genomics)
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Gretchen Navidi (Principal Analyst, Grants Management)
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A major contributor to this article appears to have a
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Policy for the National Database for Autism Research
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Policy for the National Database for Autism Research
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Anne Sperling, Ph.D. (Health Science Policy Analyst)
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National Institute of Environmental Health Sciences
253:. Unsourced material may be challenged and removed.
725:Question 7, Objective H of the IACC Strategic Plan
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1970:The Curious Incident of the Dog in the Night-Time
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2125:Mental health organizations based in Maryland
2072:Journal of Autism and Developmental Disorders
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694:Interagency Autism Coordinating Committee
477:Interagency Autism Coordinating Committee
331:Learn how and when to remove this message
313:Learn how and when to remove this message
211:Learn how and when to remove this message
102:Learn how and when to remove this message
2130:2006 establishments in the United States
1715:Autistic Society of Trinidad and Tobago
1439:Center for Autism and Related Disorders
1296:Selective serotonin reuptake inhibitors
682:NIMH's Top 10 Research Advances of 2011
481:Department of Health and Human Services
262:"National Database for Autism Research"
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2082:Research in Autism Spectrum Disorders
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344:National Database for Autism Research
1472:Eden II School for Autistic Children
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251:adding citations to reliable sources
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457:Center for Information Technology
395:Brian Koser (Operations Manager)
31:This article has multiple issues.
2026:Ian's Walk: A Story about Autism
831:, Genomics Sample Data Structure
673:2008 and 2009 NIH Award of Merit
617:Autism Genetic Resource Exchange
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82:. Please discuss further on the
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1939:Son-Rise: The Miracle Continues
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238:needs additional citations for
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391:Greg Farber, Ph.D. (Director)
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1215:Gluten-free, casein-free diet
1190:Auditory integration training
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370:National Institutes of Health
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1585:Autism Network International
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1245:Sensory integration therapy
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191:the claims made and adding
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491:Oversight and governance
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431:and collaboration among
1874:Autism's False Prophets
1819:Luke Priddis Foundation
1517:Western Autistic School
1377:Yale Child Study Center
1115:Discrete trial training
1864:Animals in Translation
1557:Autism rights movement
1393:Autism Research Centre
1199:Judge Rotenberg Center
1154:Social skills training
978:Communication Shutdown
852:NDAR Data Contribution
469:United States Congress
1717:(Trinidad and Tobago)
1467:Alpine Learning Group
649:Sequence Read Archive
621:Autism Tissue Program
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1879:Extreme Love: Autism
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1281:Occupational therapy
1205:Chelation of mercury
1011:Fictional characters
473:Combating Autism Act
247:improve this article
2062:Autism in Adulthood
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544:Columbia University
380:Rockville, Maryland
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2014:For younger people
2000:The Winter Journey
1934:Somebody Somewhere
1904:Look Me in the Eye
1889:In a Different Key
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1016:Films about autism
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1173:PLAY Project
1088:Aripiprazole
1001:Autistic art
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245:Please help
240:verification
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130:lead section
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33:Please help
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1985:Mockingbird
1980:House Rules
1949:Switched On
1944:Strange Son
1919:NeuroTribes
1852:Non-fiction
1821:(Australia)
1765:Autism Plus
1519:(Australia)
1496:(Singapore)
1412:Researchers
1255:Vitamin B12
1220:Hug machine
1093:Risperidone
1047:KultureCity
471:passed the
439:(NIH): the
2109:Categories
1990:Saving Max
1842:Literature
1102:Behavioral
700:References
655:NDAR Study
647:, and the
611:Federation
463:Background
387:Key people
273:newspapers
185:improve it
36:improve it
1975:Dear John
1795:(Denmark)
1770:Autistica
1723:(Jamaica)
1708:Caribbean
1276:Melatonin
1169:Floortime
1066:Therapies
961:Awareness
930:resources
189:verifying
140:and help
84:talk page
42:talk page
2050:Journals
1674:(Mexico)
1571:Americas
1333:Research
1250:Son-Rise
1240:Secretin
805:22622767
688:See also
303:May 2013
201:May 2013
150:May 2013
92:May 2013
1963:Fiction
1812:Oceania
1695:(India)
1459:Schools
1425:Therapy
1323:Centers
1264:Related
993:Culture
950:history
945:outline
796:4219200
406:Website
366:Founder
358:Founded
287:scholar
183:Please
2057:Autism
1731:Europe
1668:(Peru)
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1119:Lovaas
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928:Autism
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294:JSTOR
280:books
1686:Asia
1513:(UK)
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801:PMID
582:AFNI
423:The
415:.gov
413:.nih
411:ndar
361:2006
266:news
791:PMC
783:doi
587:EEG
249:by
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