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1 Numbers reported are subjects by age
New Trial
New Project

Format should be in the following format: Activity Code, Institute Abbreviation, and Serial Number. Grant Type, Support Year, and Suffix should be excluded. For example, grant 1R01MH123456-01A1 should be entered R01MH123456

Please select an experiment type below

Collection - Use Existing Experiment
To associate an experiment to the current collection, just select an axperiment from the table below then click the associate experiment button to persist your changes (saving the collection is not required). Note that once an experiment has been associated to two or more collections, the experiment will not longer be editable.

The table search feature is case insensitive and targets the experiment id, experiment name and experiment type columns. The experiment id is searched only when the search term entered is a number, and filtered using a startsWith comparison. When the search term is not numeric the experiment name is used to filter the results.
SelectExperiment IdExperiment NameExperiment Type
Created On
24HI-NGS_R1Omics02/16/2011
475MB1-10 (CHOP)Omics06/07/2016
490Illumina Infinium PsychArray BeadChip AssayOmics07/07/2016
501PharmacoBOLD Resting StatefMRI07/27/2016
506PVPREFOmics08/05/2016
509ABC-CT Resting v2EEG08/18/2016
13Comparison of FI expression in Autistic and Neurotypical Homo SapiensOmics12/28/2010
18AGRE/Broad Affymetrix 5.0 Genotype ExperimentOmics01/06/2011
22Stitching PCR SequencingOmics02/14/2011
26ASD_MethylationOmics03/01/2011
29Microarray family 03 (father, mother, sibling)Omics03/24/2011
37Standard paired-end sequencing of BCRsOmics04/19/2011
38Illumina Mate-Pair BCR sequencingOmics04/19/2011
39Custom Jumping LibrariesOmics04/19/2011
40Custom CapBPOmics04/19/2011
41ImmunofluorescenceOmics05/11/2011
43Autism brain sample genotyping, IlluminaOmics05/16/2011
47ARRA Autism Sequencing Collaboration at Baylor. SOLiD 4 SystemOmics08/01/2011
53AGRE Omni1-quadOmics10/11/2011
59AGP genotypingOmics04/03/2012
60Ultradeep 454 sequencing of synaptic genes from postmortem cerebella of individuals with ASD and neurotypical controlsOmics06/23/2012
63Microemulsion PCR and Targeted Resequencing for Variant Detection in ASDOmics07/20/2012
76Whole Genome Sequencing in Autism FamiliesOmics01/03/2013
519RestingfMRI11/08/2016
90Genotyped IAN SamplesOmics07/09/2013
91NJLAGS Axiom Genotyping ArrayOmics07/16/2013
93AGP genotyping (CNV)Omics09/06/2013
106Longitudinal Sleep Study. H20 200. Channel set 2EEG11/07/2013
107Longitudinal Sleep Study. H20 200. Channel set 3EEG11/07/2013
108Longitudinal Sleep Study. AURA 200EEG11/07/2013
105Longitudinal Sleep Study. H20 200. Channel set 1EEG11/07/2013
109Longitudinal Sleep Study. AURA 400EEG11/07/2013
116Gene Expression Analysis WG-6Omics01/07/2014
131Jeste Lab UCLA ACEii: Charlie Brown and Sesame Street - Project 1Eye Tracking02/27/2014
132Jeste Lab UCLA ACEii: Animacy - Project 1Eye Tracking02/27/2014
133Jeste Lab UCLA ACEii: Mom Stranger - Project 2Eye Tracking02/27/2014
134Jeste Lab UCLA ACEii: Face Emotion - Project 3Eye Tracking02/27/2014
145AGRE/FMR1_Illumina.JHUOmics04/14/2014
146AGRE/MECP2_Sanger.JHUOmics04/14/2014
147AGRE/MECP2_Junior.JHUOmics04/14/2014
151Candidate Gene Identification in familial AutismOmics06/09/2014
152NJLAGS Whole Genome SequencingOmics07/01/2014
154Math Autism Study - Vinod MenonfMRI07/15/2014
155RestingfMRI07/25/2014
156SpeechfMRI07/25/2014
159EmotionfMRI07/25/2014
160syllable contrastEEG07/29/2014
167School-age naturalistic stimuliEye Tracking09/19/2014
44AGRE/Broad Affymetrix 5.0 Genotype ExperimentOmics06/27/2011
45Exome Sequencing of 20 Sporadic Cases of Autism Spectrum DisorderOmics07/15/2011
Collection - Add Experiment
Add Supporting Documentation
Select File

To add an existing Data Structure, enter its title in the search bar. If you need to request changes, select the indicator "No, it requires changes to meet research needs" after selecting the Structure, and upload the file with the request changes specific to the selected Data Structure. Your file should follow the Request Changes Procedure. If the Data Structure does not exist, select "Request New Data Structure" and upload the appropriate zip file.

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The Data Expected list for this Collection shows some raw data as missing. Contact the NDA Help Desk with any questions.

Please confirm that you will not be enrolling any more subjects and that all raw data has been collected and submitted.

Collection Updated

Your Collection is now in Data Analysis phase and exempt from biannual submissions. Analyzed data is still expected prior to publication or no later than the project end date.

[CMS] Attention
[CMS] Please confirm that you will not be enrolling any more subjects and that all raw data has been collected and submitted.
[CMS] Error

[CMS]

Unable to change collection phase where targeted enrollment is less than 90%

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You have requested to move the sharing dates for the following assessments:
Data Expected Item Original Sharing Date New Sharing Date

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Explanation must be between 20 and 200 characters in length.

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Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
UCLA Sigman/Bookheimer ACE and ARRA
Sigman M, Geschwind D, Bookheimer S 
ACE Projects: 1) PI Sigman - Infant Sibs. 2) PI Geschwind - Genetics. 3) PI Dapretto - Mirror neuron and imaging. 4) PI Kasari - Optimizing outcomes for toddlers. 5) PI McCracken - Understanding repetitive behaviors. ARRA: PI Bookheimer - Neural and Phenotypic Correlates of Autism Risk Genes
NIMH Data Archive
04/01/2008
Autism Centers of Excellence (ACE), NIMH Repository & Genomics Resource (NRGR)
Funding Completed
Close Out
No
$8,207,980.00
452
Loading Chart...
NIH - Extramural None



P50HD055784-01 Determinants of Social, Communicative, and Other Core Deficits in Autism 08/06/2007 07/31/2012 872 533 UNIVERSITY OF CALIFORNIA LOS ANGELES $7,117,866.00
R01HD065280-01 Neural and Phenotypic Correlates of Autism Risk Genes 09/30/2009 08/31/2012 120 20 UNIVERSITY OF CALIFORNIA LOS ANGELES $1,090,114.00

helpcenter.collection.general-tab

NDA Help Center

Collection - General Tab

Fields available for edit on the top portion of the page include:

  • Collection Title
  • Investigators
  • Collection Description
  • Collection Phase
  • Funding Source
  • Clinical Trials

Collection Phase: The current status of a research project submitting data to an NDA Collection, based on the timing of the award and/or the data that have been submitted.

  • Pre-Enrollment: The default entry made when the NDA Collection is created.
  • Enrolling: Data have been submitted to the NDA Collection or the NDA Data Expected initial submission date has been reached for at least one data structure category in the NDA Collection.
  • Data Analysis: Subject level data collection for the research project is completed and has been submitted to the NDA Collection. The NDA Collection owner or the NDA Help Desk may set this phase when they’ve confirmed data submission is complete and submitted subject counts match at least 90% of the target enrollment numbers in the NDA Data Expected. Data submission reminders will be turned off for the NDA Collection.
  • Funding Completed: The NIH grant award (or awards) associated with the NDA Collection has reached its end date. NDA Collections in Funding Completed phase are assigned a subphase to indicate the status of data submission.
    • The Data Expected Subphase indicates that NDA expects more data will be submitted
    • The Closeout Subphase indicates the data submission is complete.
    • The Sharing Not Met Subphase indicates that data submission was not completed as expected.

Blinded Clinical Trial Status:

  • This status is set by a Collection Owner and indicates the research project is a double blinded clinical trial. When selected, the public view of Data Expected will show the Data Expected items and the Submission Dates, but the targeted enrollment and subjects submitted counts will not be displayed.
  • Targeted enrollment and subjects submitted counts are visible only to NDA Administrators and to the NDA Collection or as the NDA Collection Owner.
  • When an NDA Collection that is flagged Blinded Clinical Trial reaches the maximum data sharing date for that Data Repository (see https://nda.nih.gov/nda/sharing-regimen.html), the embargo on Data Expected information is released.

Funding Source

The organization(s) responsible for providing the funding is listed here.

Supporting Documentation

Users with Submission privileges, as well as Collection Owners, Program Officers, and those with Administrator privileges, may upload and attach supporting documentation. By default, supporting documentation is shared to the general public, however, the option is also available to limit this information to qualified researchers only.

Grant Information

Identifiable details are displayed about the Project of which the Collection was derived from. You may click in the Project Number to view a full report of the Project captured by the NIH.

Clinical Trials

Any data that is collected to support or further the research of clinical studies will be available here. Collection Owners and those with Administrator privileges may add new clinical trials.

Frequently Asked Questions

  • How does the NIMH Data Archive (NDA) determine which Permission Group data are submitted into?
    During Collection creation, NDA staff determine the appropriate Permission Group based on the type of data to be submitted, the type of access that will be available to data access users, and the information provided by the Program Officer during grant award.
  • How do I know when a NDA Collection has been created?
    When a Collection is created by NDA staff, an email notification will automatically be sent to the PI(s) of the grant(s) associated with the Collection to notify them.
  • Is a single grant number ever associated with more than one Collection?
    The NDA system does not allow for a single grant to be associated with more than one Collection; therefore, a single grant will not be listed in the Grant Information section of a Collection for more than one Collection.
  • Why is there sometimes more than one grant included in a Collection?
    In general, each Collection is associated with only one grant; however, multiple grants may be associated if the grant has multiple competing segments for the same grant number or if multiple different grants are all working on the same project and it makes sense to hold the data in one Collection (e.g., Cooperative Agreements).

Glossary

  • Administrator Privilege
    A privilege provided to a user associated with an NDA Collection or NDA Study whereby that user can perform a full range of actions including providing privileges to other users.
  • Collection Owner
    Generally, the Collection Owner is the contact PI listed on a grant. Only one NDA user is listed as the Collection owner. Most automated emails are primarily sent to the Collection Owner.
  • Collection Phase
    The Collection Phase provides information on data submission as opposed to grant/project completion so while the Collection phase and grant/project phase may be closely related they are often different. Collection users with Administrative Privileges are encouraged to edit the Collection Phase. The Program Officer as listed in eRA (for NIH funded grants) may also edit this field. Changes must be saved by clicking the Save button at the bottom of the page. This field is sortable alphabetically in ascending or descending order. Collection Phase options include:
    • Pre-Enrollment: A grant/project has started, but has not yet enrolled subjects.
    • Enrolling: A grant/project has begun enrolling subjects. Data submission is likely ongoing at this point.
    • Data Analysis: A grant/project has completed enrolling subjects and has completed all data submissions.
    • Funding Completed: A grant/project has reached the project end date.
  • Collection Title
    An editable field with the title of the Collection, which is often the title of the grant associated with the Collection.
  • Grant
    Provides the grant number(s) for the grant(s) associated with the Collection. The field is a hyperlink so clicking on the Grant number will direct the user to the grant information in the NIH Research Portfolio Online Reporting Tools (RePORT) page.
  • Supporting Documentation
    Various documents and materials to enable efficient use of the data by investigators unfamiliar with the project and may include the research protocol, questionnaires, and study manuals.
  • NIH Research Initiative
    NDA Collections may be organized by scientific similarity into NIH Research Initiatives, to facilitate query tool user experience. NIH Research Initiatives map to one or multiple Funding Opportunity Announcements.
  • Permission Group
    Access to shared record-level data in NDA is provisioned at the level of a Permission Group. NDA Permission Groups consist of one or multiple NDA Collections that contain data with the same subject consents.
  • Planned Enrollment
    Number of human subject participants to be enrolled in an NIH-funded clinical research study. The data is provided in competing applications and annual progress reports.
  • Actual Enrollment
    Number of human subjects enrolled in an NIH-funded clinical research study. The data is provided in annual progress reports.
  • NDA Collection
    A virtual container and organization structure for data and associated documentation from one grant or one large project/consortium. It contains tools for tracking data submission and allows investigators to define a wide array of other elements that provide context for the data, including all general information regarding the data and source project, experimental parameters used to collect any event-based data contained in the Collection, methods, and other supporting documentation. They also allow investigators to link underlying data to an NDA Study, defining populations and subpopulations specific to research aims.
  • Data Use Limitations
    Data Use Limitations (DULs) describe the appropriate secondary use of a dataset and are based on the original informed consent of a research participant. NDA only accepts consent-based data use limitations defined by the NIH Office of Science Policy.
  • Total Subjects Shared
    The total number of unique subjects for whom data have been shared and are available for users with permission to access data.
IDNameCreated DateStatusType
65SNP genotypes Illumina 370k07/30/2012ApprovedOmics
67SNP genotypes Illumina Omni-1: 2010-139, 2010-043, 2011-00508/20/2012ApprovedOmics
68SNP genotypes Illumina OmniExpress: 2011-01508/20/2012ApprovedOmics
helpcenter.collection.experiments-tab

NDA Help Center

Collection - Experiments

The number of Experiments included is displayed in parentheses next to the tab name. You may download all experiments associated with the Collection via the Download button. You may view individual experiments by clicking the Experiment Name and add them to the Filter Cart via the Add to Cart button.

Collection Owners, Program Officers, and users with Submission or Administrative Privileges for the Collection may create or edit an Experiment.

Please note: The creation of an NDA Experiment does not necessarily mean that data collected, according to the defined Experiment, has been submitted or shared.

Frequently Asked Questions

  • Can an Experiment be associated with more than one Collection?

    Yes -see the “Copy” button in the bottom left when viewing an experiment. There are two actions that can be performed via this button:

    1. Copy the experiment with intent for modifications.
    2. Associate the experiment to the collection. No modifications can be made to the experiment.

Glossary

  • Experiment Status
    An Experiment must be Approved before data using the associated Experiment_ID may be uploaded.
  • Experiment ID
    The ID number automatically generated by NDA which must be included in the appropriate file when uploading data to link the Experiment Definition to the subject record.
Autism Diagnostic Interview, Revised (ADI-R) Clinical Assessments 286
Autism Diagnostic Observation Schedule (ADOS) - Module 4 Clinical Assessments 4
Autism Diagnostic Observation Schedule (ADOS)- Module 1 Clinical Assessments 3
Autism Diagnostic Observation Schedule (ADOS)- Module 2 Clinical Assessments 37
Autism Diagnostic Observation Schedule (ADOS)- Module 3 Clinical Assessments 144
CHARGE Medical History Clinical Assessments 211
CHARGE Physical Exam Clinical Assessments 193
Genomics Sample Genomics 180
Genomics Subject Genomics 180
Image Imaging 161
Karyotype Clinical Assessments 22
Modified CHARGE Family Medical History (2007) Clinical Assessments 161
Modified CHARGE Family Medical History (rev July 2007) Clinical Assessments 1
Mullen Scales of Early Learning Clinical Assessments 101
Stanford-Binet Intelligence Scales, Fifth Edition (SB5) Clinical Assessments 29
Vineland-II - Parent and Caregiver Rating Form (2005) Clinical Assessments 257
Wechsler Intelligence Scale for Children - IV [part 2] Clinical Assessments 65
helpcenter.collection.shared-data-tab

NDA Help Center

Collection - Shared Data

This tab provides a quick overview of the Data Structure title, Data Type, and Number of Subjects that are currently Shared for the Collection. The information presented in this tab is automatically generated by NDA and cannot be edited. If no information is visible on this tab, this would indicate the Collection does not have shared data or the data is private.

The shared data is available to other researchers who have permission to access data in the Collection's designated Permission Group(s). Use the Download button to get all shared data from the Collection to the Filter Cart.

Frequently Asked Questions

  • How will I know if another researcher uses data that I shared through the NIMH Data Archive (NDA)?
    To see what data your project have submitted are being used by a study, simply go the Associated Studies tab of your collection. Alternatively, you may review an NDA Study Attribution Report available on the General tab.
  • Can I get a supplement to share data from a completed research project?
    Often it becomes more difficult to organize and format data electronically after the project has been completed and the information needed to create a GUID may not be available; however, you may still contact a program staff member at the appropriate funding institution for more information.
  • Can I get a supplement to share data from a research project that is still ongoing?
    Unlike completed projects where researchers may not have the information needed to create a GUID and/or where the effort needed to organize and format data becomes prohibitive, ongoing projects have more of an opportunity to overcome these challenges. Please contact a program staff member at the appropriate funding institution for more information.

Glossary

  • Data Structure
    A defined organization and group of Data Elements to represent an electronic definition of a measure, assessment, questionnaire, or collection of data points. Data structures that have been defined in the NDA Data Dictionary are available at https://nda.nih.gov/general-query.html?q=query=data-structure
  • Data Type
    A grouping of data by similar characteristics such as Clinical Assessments, Omics, or Neurosignal data.
  • Shared
    The term 'Shared' generally means available to others; however, there are some slightly different meanings based on what is Shared. A Shared NDA Study is viewable and searchable publicly regardless of the user's role or whether the user has an NDA account. A Shared NDA Study does not necessarily mean that data used in the NDA Study have been shared as this is independently determined. Data are shared according the schedule defined in a Collection's Data Expected Tab and/or in accordance with data sharing expectations in the NDA Data Sharing Terms and Conditions. Additionally, Supporting Documentation uploaded to a Collection may be shared independent of whether data are shared.

Collection Owners and those with Collection Administrator permission, may edit a collection. The following is currently available for Edit on this page:

Publications

Publications relevant to NDA data are listed below. Most displayed publications have been associated with the grant within Pubmed. Use the "+ New Publication" button to add new publications. Publications relevant/not relevant to data expected are categorized. Relevant publications are then linked to the underlying data by selecting the Create Study link. Study provides the ability to define cohorts, assign subjects, define outcome measures and lists the study type, data analysis and results. Analyzed data and results are expected in this way.

PubMed IDStudyTitleJournalAuthorsDateStatus
39011552Create StudyFamilial Recurrence of Autism: Updates From the Baby Siblings Research Consortium.PediatricsOzonoff, Sally; Young, Gregory S; Bradshaw, Jessica; Charman, Tony; Chawarska, Katarzyna; Iverson, Jana M; Klaiman, Cheryl; Landa, Rebecca J; McDonald, Nicole; Messinger, Daniel; Schmidt, Rebecca J; Wilkinson, Carol L; Zwaigenbaum, LonnieAugust 1, 2024Not Determined
38703054Create StudyPatterns of spontaneous neural activity associated with social communication abilities among infants and toddlers showing signs of autism.The European journal of neuroscienceCohenour, Torrey; Dickinson, Abigail; Jeste, Shafali; Gulsrud, Amanda; Kasari, ConnieJuly 1, 2024Not Determined
38649483Create StudySalience network connectivity is altered in 6-week-old infants at heightened likelihood for developing autism.Communications biologyTsang, Tawny; Green, Shulamite A; Liu, Janelle; Lawrence, Katherine; Jeste, Shafali; Bookheimer, Susan Y; Dapretto, MirellaApril 22, 2024Not Determined
38009228Create StudySlower pace in early walking onset is related to communication, motor skills, and adaptive function in autistic toddlers.Autism research : official journal of the International Society for Autism ResearchWilson, Rujuta B; Burdekin, Emma D; Jackson, Nicholas J; Hughart, Lauren; Anderson, Jeff; Dusing, Stacey C; Gulsrud, Amanda; Kasari, ConnieJanuary 1, 2024Not Determined
37840458Create StudyShared and distinct biological mechanisms for anxiety and sensory over-responsivity in youth with autism versus anxiety disorders.Journal of neuroscience researchCummings, Kaitlin K; Jung, Jiwon; Zbozinek, Tomislav D; Wilhelm, Frank H; Dapretto, Mirella; Craske, Michelle G; Bookheimer, Susan Y; Green, Shulamite AJanuary 1, 2024Not Determined
37817282Create StudyAge-related changes in neural responses to sensory stimulation in autism: a cross-sectional study.Molecular autismCakar, Melis E; Cummings, Kaitlin K; Bookheimer, Susan Y; Dapretto, Mirella; Green, Shulamite AOctober 11, 2023Not Determined
37506195Create StudyThe contributions of rare inherited and polygenic risk to ASD in multiplex families.Proceedings of the National Academy of Sciences of the United States of AmericaCirnigliaro, Matilde; Chang, Timothy S; Arteaga, Stephanie A; Pérez-Cano, Laura; Ruzzo, Elizabeth K; Gordon, Aaron; Bicks, Lucy K; Jung, Jae-Yoon; Lowe, Jennifer K; Wall, Dennis P; Geschwind, Daniel HAugust 1, 2023Not Determined
37451263Create StudyImprovement of sensory deficits in fragile X mice by increasing cortical interneuron activity after the critical period.NeuronKourdougli, Nazim; Suresh, Anand; Liu, Benjamin; Juarez, Pablo; Lin, Ashley; Chung, David T; Graven Sams, Anette; Gandal, Michael J; Martínez-Cerdeño, Verónica; Buonomano, Dean V; Hall, Benjamin J; Mombereau, Cédric; Portera-Cailliau, CarlosSeptember 20, 2023Not Determined
37408377Create StudyHeterogeneity of autism symptoms in community-referred infants and toddlers at elevated or low familial likelihood of autism.Autism research : official journal of the International Society for Autism ResearchCohenour, Torrey L; Gulsrud, Amanda; Kasari, ConnieSeptember 1, 2023Not Determined
37005061Create StudyAssociations between thalamocortical functional connectivity and sensory over-responsivity in infants at high likelihood for ASD.Cerebral cortex (New York, N.Y. : 1991)Wagner, Lauren; Banchik, Megan; Okada, Nana J; McDonald, Nicole; Jeste, Shafali S; Bookheimer, Susan Y; Green, Shulamite A; Dapretto, MirellaJune 8, 2023Not Determined
36829214Create StudySex differences in friendships and loneliness in autistic and non-autistic children across development.Molecular autismLibster, Natalie; Knox, Azia; Engin, Selin; Geschwind, Daniel; Parish-Morris, Julia; Kasari, ConnieFebruary 24, 2023Not Determined
36566252Create StudyPersonal victimization experiences of autistic and non-autistic children.Molecular autismLibster, Natalie; Knox, Azia; Engin, Selin; Geschwind, Daniel; Parish-Morris, Julia; Kasari, ConnieDecember 24, 2022Not Determined
36183905Create StudyChallenges and opportunities for precision medicine in neurodevelopmental disorders.Advanced drug delivery reviewsChen, George T; Geschwind, Daniel HDecember 1, 2022Not Determined
35678946Create StudyPredictors of Attrition in a Randomized Trial of a Social Communication Intervention for Infant-Toddlers at Risk for Autism.Journal of autism and developmental disordersSterrett, Kyle; Magaña, Maira Tafolla; Gulsrud, Amanda; Paparella, Tanya; Kasari, ConnieAugust 1, 2023Not Determined
35437928Create StudySuper responders: Predicting language gains from JASPER among limited language children with autism spectrum disorder.Autism research : official journal of the International Society for Autism ResearchPanganiban, Jonathan; Kasari, ConnieAugust 1, 2022Not Determined
35176551Create StudyElectrophysiological signatures of brain aging in autism spectrum disorder.Cortex; a journal devoted to the study of the nervous system and behaviorDickinson, Abigail; Jeste, Shafali; Milne, ElizabethMarch 1, 2022Not Determined
34882790Create StudyAtypical cerebellar functional connectivity at 9 months of age predicts delayed socio-communicative profiles in infants at high and low risk for autism.Journal of child psychology and psychiatry, and allied disciplinesOkada, Nana J; Liu, Janelle; Tsang, Tawny; Nosco, Erin; McDonald, Nicole M; Cummings, Kaitlin K; Jung, Jiwon; Patterson, Genevieve; Bookheimer, Susan Y; Green, Shulamite A; Jeste, Shafali S; Dapretto, MirellaSeptember 1, 2022Not Determined
34807457Create StudyStudying the early emergence of autism: what is the goal of baby siblings research?Developmental medicine and child neurologyMcDonald, Nicole MMay 1, 2022Not Determined
34797038Create StudyParenting stress in caregiver-mediated interventions for toddlers with autism: An application of quantile regression mixed models.Autism research : official journal of the International Society for Autism ResearchSchlink, Andrew; Williams, Justin; Pizzano, Maria; Gulsrud, Amanda; Kasari, ConnieFebruary 1, 2022Not Determined
34158222Create StudyDrug development for Autism Spectrum Disorder (ASD): Progress, challenges, and future directions.European neuropsychopharmacology : the journal of the European College of NeuropsychopharmacologyMcCracken, James T; Anagnostou, Evdokia; Arango, Celso; Dawson, Geraldine; Farchione, Tiffany; Mantua, Valentina; McPartland, James; Murphy, Declan; Pandina, Gahan; Veenstra-VanderWeele, Jeremy; ISCTM/ECNP ASD Working GroupJuly 1, 2021Not Determined
34109620Create StudyEarly concerns in parents of infants at risk for autism.Developmental medicine and child neurologyTran, Amanda T; Del Rosario, Mithi; Nosco, Erin; Li, Yihao; Senturk, Damla; Mcdonald, Nicole M; Wilson, Rujuta B; Dapretto, Mirella; Jeste, Shafali SDecember 1, 2021Not Determined
34098753Create StudyWhat are the odds? Predicting the likelihood of a negative episode in a sample of toddlers with autism spectrum disorder.Autism : the international journal of research and practiceDimachkie Nunnally, Amanda; Sterrett, Kyle; Gulsrud, Amanda; Kasari, ConnieNovember 1, 2021Not Determined
34050248Create StudyTranscriptome analysis of MBD5-associated neurodevelopmental disorder (MAND) neural progenitor cells reveals dysregulation of autism-associated genes.Scientific reportsMullegama, Sureni V; Klein, Steven D; Williams, Stephen R; Innis, Jeffrey W; Probst, Frank J; Haldeman-Englert, Chad; Martinez-Agosto, Julian A; Yang, Ying; Tian, Yuchen; Elsea, Sarah H; Ezashi, ToshihikoMay 28, 2021Not Determined
33866373Create StudyAltered Thalamocortical Connectivity in 6-Week-Old Infants at High Familial Risk for Autism Spectrum Disorder.Cerebral cortex (New York, N.Y. : 1991)Nair, Aarti; Jalal, Rhideeta; Liu, Janelle; Tsang, Tawny; McDonald, Nicole M; Jackson, Lisa; Ponting, Carolyn; Jeste, Shafali S; Bookheimer, Susan Y; Dapretto, MirellaJuly 29, 2021Not Determined
33860866Create StudyBeyond Baby Siblings-Expanding the Definition of "High-Risk Infants" in Autism Research.Current psychiatry reportsMcDonald, Nicole M; Jeste, Shafali SApril 16, 2021Not Determined
33587311Create StudyAssociations between physiological and neural measures of sensory reactivity in youth with autism.Journal of child psychology and psychiatry, and allied disciplinesJung, Jiwon; Zbozinek, Tomislav D; Cummings, Kaitlin K; Wilhelm, Frank H; Dapretto, Mirella; Craske, Michelle G; Bookheimer, Susan Y; Green, Shulamite AOctober 1, 2021Not Determined
33436538Create StudySensory over-responsivity is related to GABAergic inhibition in thalamocortical circuits.Translational psychiatryWood, Emily T; Cummings, Kaitlin K; Jung, Jiwon; Patterson, Genevieve; Okada, Nana; Guo, Jia; O'Neill, Joseph; Dapretto, Mirella; Bookheimer, Susan Y; Green, Shulamite AJanuary 12, 2021Not Determined
33389145Create Study5q35 duplication presents with psychiatric and undergrowth phenotypes mediated by NSD1 overexpression and mTOR signaling downregulation.Human geneticsQuintero-Rivera, Fabiola; Eno, Celeste C; Sutanto, Christine; Jones, Kelly L; Nowaczyk, Małgorzata J M; Wong, Derek; Earl, Dawn; Mirzaa, Ghayda; Beck, Anita; Martinez-Agosto, Julian AApril 1, 2021Not Determined
33368921Create StudyLack of neural evidence for implicit language learning in 9-month-old infants at high risk for autism.Developmental scienceLiu, Janelle; Tsang, Tawny; Ponting, Carolyn; Jackson, Lisa; Jeste, Shafali S; Bookheimer, Susan Y; Dapretto, MirellaJuly 1, 2021Not Determined
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20552678Create StudyAccuracy of phenotyping of autistic children based on Internet implemented parent report.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric GeneticsLee, Hane; Marvin, Alison R; Watson, Tamara; Piggot, Judith; Law, J Kiely; Law, Paul A; Constantino, John N; Nelson, Stanley FSeptember 2010Not Relevant
20546081Create StudyResponse to distress in infants at risk for autism: a prospective longitudinal study.Journal of child psychology and psychiatry, and allied disciplinesHutman, Ted; Rozga, Agata; DeLaurentis, Angeline D; Barnwell, Jenna M; Sugar, Catherine A; Sigman, MarianSeptember 2010Not Determined
20531469Create StudyFunctional impact of global rare copy number variation in autism spectrum disorders.NaturePinto, Dalila; Pagnamenta, Alistair T; Klei, Lambertus; Anney, Richard; Merico, Daniele; Regan, Regina; Conroy, Judith; Magalhaes, Tiago R; Correia, Catarina; Abrahams, Brett S; Almeida, Joana; Bacchelli, Elena; Bader, Gary D; Bailey, Anthony J; Baird, Gillian; Battaglia, Agatino; Berney, Tom; Bolshakova, Nadia; Bölte, Sven; Bolton, Patrick F; Bourgeron, Thomas; Brennan, Sean; Brian, Jessica; Bryson, Susan E; Carson, Andrew R; Casallo, Guillermo; Casey, Jillian; Chung, Brian H Y; Cochrane, Lynne; Corsello, Christina; Crawford, Emily L; Crossett, Andrew; Cytrynbaum, Cheryl; Dawson, Geraldine; de Jonge, Maretha; Delorme, Richard; Drmic, Irene; Duketis, Eftichia; Duque, Frederico; Estes, Annette; Farrar, Penny; Fernandez, Bridget A; Folstein, Susan E; Fombonne, Eric; Freitag, Christine M; Gilbert, John; Gillberg, Christopher; Glessner, Joseph T; Goldberg, Jeremy; Green, Andrew; Green, Jonathan; Guter, Stephen J; Hakonarson, Hakon; Heron, Elizabeth A; Hill, Matthew; Holt, Richard; Howe, Jennifer L; Hughes, Gillian; Hus, Vanessa; Igliozzi, Roberta; Kim, Cecilia; Klauck, Sabine M; Kolevzon, Alexander; Korvatska, Olena; Kustanovich, Vlad; Lajonchere, Clara M; Lamb, Janine A; Laskawiec, Magdalena; Leboyer, Marion; Le Couteur, Ann; Leventhal, Bennett L; Lionel, Anath C; Liu, Xiao-Qing; Lord, Catherine; Lotspeich, Linda; Lund, Sabata C; Maestrini, Elena; Mahoney, William; Mantoulan, Carine; Marshall, Christian R; McConachie, Helen; McDougle, Christopher J; McGrath, Jane; McMahon, William M; Merikangas, Alison; Migita, Ohsuke; Minshew, Nancy J; Mirza, Ghazala K; Munson, Jeff; Nelson, Stanley F; Noakes, Carolyn; Noor, Abdul; Nygren, Gudrun; Oliveira, Guiomar; Papanikolaou, Katerina; Parr, Jeremy R; Parrini, Barbara; Paton, Tara; Pickles, Andrew; Pilorge, Marion; Piven, Joseph; Ponting, Chris P; Posey, David J; Poustka, Annemarie; Poustka, Fritz; Prasad, Aparna; Ragoussis, Jiannis; Renshaw, Katy; Rickaby, Jessica; Roberts, Wendy; Roeder, Kathryn; Roge, Bernadette; Rutter, Michael L; Bierut, Laura J; Rice, John P; Salt, Jeff; Sansom, Katherine; Sato, Daisuke; Segurado, Ricardo; Sequeira, Ana F; Senman, Lili; Shah, Naisha; Sheffield, Val C; Soorya, Latha; Sousa, Inês; Stein, Olaf; Sykes, Nuala; Stoppioni, Vera; Strawbridge, Christina; Tancredi, Raffaella; Tansey, Katherine; Thiruvahindrapduram, Bhooma; Thompson, Ann P; Thomson, Susanne; Tryfon, Ana; Tsiantis, John; Van Engeland, Herman; Vincent, John B; Volkmar, Fred; Wallace, Simon; Wang, Kai; Wang, Zhouzhi; Wassink, Thomas H; Webber, Caleb; Weksberg, Rosanna; Wing, Kirsty; Wittemeyer, Kerstin; Wood, Shawn; Wu, Jing; Yaspan, Brian L; Zurawiecki, Danielle; Zwaigenbaum, Lonnie; Buxbaum, Joseph D; Cantor, Rita M; Cook, Edwin H; Coon, Hilary; Cuccaro, Michael L; Devlin, Bernie; Ennis, Sean; Gallagher, Louise; Geschwind, Daniel H; Gill, Michael; Haines, Jonathan L; Hallmayer, Joachim; Miller, Judith; Monaco, Anthony P; Nurnberger Jr, John I; Paterson, Andrew D; Pericak-Vance, Margaret A; Schellenberg, Gerard D; Szatmari, Peter; Vicente, Astrid M; Vieland, Veronica J; Wijsman, Ellen M; Scherer, Stephen W; Sutcliffe, James S; Betancur, CatalinaJuly 15, 2010Not Determined
20437601Create StudyReward processing in autism.Autism research : official journal of the International Society for Autism ResearchScott-Van Zeeland, Ashley A; Dapretto, Mirella; Ghahremani, Dara G; Poldrack, Russell A; Bookheimer, Susan YApril 2010Not Relevant
20394055Create StudyLanguage-related Cntnap2 gene is differentially expressed in sexually dimorphic song nuclei essential for vocal learning in songbirds.The Journal of comparative neurologyPanaitof, S Carmen; Abrahams, Brett S; Dong, Hongmei; Geschwind, Daniel H; White, Stephanie AJune 1, 2010Not Relevant
20385903Create StudyConnecting genes to brain in the autism spectrum disorders.Archives of neurologyAbrahams, Brett S; Geschwind, Daniel HApril 2010Not Relevant
20303070Create StudyNo neural evidence of statistical learning during exposure to artificial languages in children with autism spectrum disorders.Biological psychiatryScott-Van Zeeland, Ashley A; McNealy, Kristin; Wang, A Ting; Sigman, Marian; Bookheimer, Susan Y; Dapretto, MirellaAugust 15, 2010Not Relevant
20302390Create StudyFactors predicting language lateralization in patients with perisylvian vascular malformations. Clinical article.Journal of neurosurgeryLee, Darrin J; Pouratian, Nader; Bookheimer, Susan Y; Martin, Neil AOctober 2010Not Determined
20121438Create StudyThe reliability of neuroanatomy as a predictor of eloquence: a review.Neurosurgical focusPouratian N, Bookheimer SYFebruary 2010Not Relevant
19874940Create StudyAutism: the ups and downs of neuroligin.Biological psychiatryGeschwind DHNovember 15, 2009Not Relevant
19630577Create StudyAdvances in autism.Annual review of medicineGeschwind DH2009Not Relevant
19557195Create StudyGenome-wide analyses of exonic copy number variants in a family-based study point to novel autism susceptibility genes.PLoS geneticsBucan, Maja; Abrahams, Brett S; Wang, Kai; Glessner, Joseph T; Herman, Edward I; Sonnenblick, Lisa I; Alvarez Retuerto, Ana I; Imielinski, Marcin; Hadley, Dexter; Bradfield, Jonathan P; Kim, Cecilia; Gidaya, Nicole B; Lindquist, Ingrid; Hutman, Ted; Sigman, Marian; Kustanovich, Vlad; Lajonchere, Clara M; Singleton, Andrew; Kim, Junhyong; Wassink, Thomas H; McMahon, William M; Owley, Thomas; Sweeney, John A; Coon, Hilary; Nurnberger, John I; Li, Mingyao; Cantor, Rita M; Minshew, Nancy J; Sutcliffe, James S; Cook, Edwin H; Dawson, Geraldine; Buxbaum, Joseph D; Grant, Struan F A; Schellenberg, Gerard D; Geschwind, Daniel H; Hakonarson, HakonJune 2009Not Determined
19477629Create StudyGenetic advances in autism: heterogeneity and convergence on shared pathways.Current opinion in genetics & developmentBill, Brent R; Geschwind, Daniel HJune 2009Not Relevant
19404256Create StudyCommon genetic variants on 5p14.1 associate with autism spectrum disorders.NatureWang, Kai; Zhang, Haitao; Ma, Deqiong; Bucan, Maja; Glessner, Joseph T; Abrahams, Brett S; Salyakina, Daria; Imielinski, Marcin; Bradfield, Jonathan P; Sleiman, Patrick M A; Kim, Cecilia E; Hou, Cuiping; Frackelton, Edward; Chiavacci, Rosetta; Takahashi, Nagahide; Sakurai, Takeshi; Rappaport, Eric; Lajonchere, Clara M; Munson, Jeffrey; Estes, Annette; Korvatska, Olena; Piven, Joseph; Sonnenblick, Lisa I; Alvarez Retuerto, Ana I; Herman, Edward I; Dong, Hongmei; Hutman, Ted; Sigman, Marian; Ozonoff, Sally; Klin, Ami; Owley, Thomas; Sweeney, John A; Brune, Camille W; Cantor, Rita M; Bernier, Raphael; Gilbert, John R; Cuccaro, Michael L; McMahon, William M; Miller, Judith; State, Matthew W; Wassink, Thomas H; Coon, Hilary; Levy, Susan E; Schultz, Robert T; Nurnberger, John I; Haines, Jonathan L; Sutcliffe, James S; Cook, Edwin H; Minshew, Nancy J; Buxbaum, Joseph D; Dawson, Geraldine; Grant, Struan F A; Geschwind, Daniel H; Pericak-Vance, Margaret A; Schellenberg, Gerard D; Hakonarson, HakonMay 28, 2009Not Determined
19155745Create StudyYour brain on Google: patterns of cerebral activation during internet searching.The American journal of geriatric psychiatry : official journal of the American Association for Geriatric PsychiatrySmall GW, Moody TD, Siddarth P, Bookheimer SYFebruary 2009Not Determined
19125863Create StudyMethyl-CpG-binding protein 2 polymorphisms and vulnerability to autism.Genes, brain, and behaviorLoat, C S; Curran, S; Lewis, C M; Duvall, J; Geschwind, D; Bolton, P; Craig, I WOctober 2008Not Determined
18999331Create StudyModeling longitudinal change in the language abilities of children with autism: parent behaviors and child characteristics as predictors of change.Developmental psychologySiller M, Sigman MNovember 2008Not Determined
18987363Create StudyA functional genetic link between distinct developmental language disorders.The New England journal of medicineVernes, Sonja C; Newbury, Dianne F; Abrahams, Brett S; Winchester, Laura; Nicod, Jérôme; Groszer, Matthias; Alarcón, Maricela; Oliver, Peter L; Davies, Kay E; Geschwind, Daniel H; Monaco, Anthony P; Fisher, Simon ENovember 27, 2008Not Relevant
18984147Create StudyAutism: many genes, common pathways?CellGeschwind, Daniel HOctober 31, 2008Not Relevant
18954473Create StudyFrontal contributions to face processing differences in autism: evidence from fMRI of inverted face processing.Journal of the International Neuropsychological Society : JINSBookheimer SY, Wang AT, Scott A, Sigman M, Dapretto MNovember 2008Not Relevant
18704077Create StudyAutism: Family connections.NatureGeschwind, Daniel HAugust 14, 2008Not Relevant
18414403Create StudyAdvances in autism genetics: on the threshold of a new neurobiology.Nature reviews. GeneticsAbrahams, Brett S; Geschwind, Daniel HMay 2008Not Relevant
17347882Create StudyOffering to share: how to put heads together in autism neuroimaging.Journal of autism and developmental disordersBelmonte, Matthew K; Mazziotta, John C; Minshew, Nancy J; Evans, Alan C; Courchesne, Eric; Dager, Stephen R; Bookheimer, Susan Y; Aylward, Elizabeth H; Amaral, David G; Cantor, Rita M; Chugani, Diane C; Dale, Anders M; Davatzikos, Christos; Gerig, Guido; Herbert, Martha R; Lainhart, Janet E; Murphy, Declan G; Piven, Joseph; Reiss, Allan L; Schultz, Robert T; Zeffiro, Thomas A; Levi-Pearl, Susan; Lajonchere, Clara; Colamarino, Sophia AJanuary 2008Not Determined
helpcenter.collection.publications-tab

NDA Help Center

Collection - Publications

The number of Publications is displayed in parentheses next to the tab name. Clicking on any of the Publication Titles will open the Publication in a new internet browsing tab.

Collection Owners, Program Officers, and users with Submission or Administrative Privileges for the Collection may mark a publication as either Relevant or Not Relevant in the Status column.

Frequently Asked Questions

  • How can I determine if a publication is relevant?
    Publications are considered relevant to a collection when the data shared is directly related to the project or collection.
  • Where does the NDA get the publications?
    PubMed, an online library containing journals, articles, and medical research. Sponsored by NiH and National Library of Medicine (NLM).

Glossary

  • Create Study
    A link to the Create an NDA Study page that can be clicked to start creating an NDA Study with information such as the title, journal and authors automatically populated.
  • Not Determined Publication
    Indicates that the publication has not yet been reviewed and/or marked as Relevant or Not Relevant so it has not been determined whether an NDA Study is expected.
  • Not Relevant Publication
    A publication that is not based on data related to the aims of the grant/project associated with the Collection or not based on any data such as a review article and, therefore, an NDA Study is not expected to be created.
  • PubMed
    PubMed provides citation information for biomedical and life sciences publications and is managed by the U.S. National Institutes of Health's National Library of Medicine.
  • PubMed ID
    The PUBMed ID is the unique ID number for the publication as recorded in the PubMed database.
  • Relevant Publication
    A publication that is based on data related to the aims of the grant/project associated with the Collection and, therefore, an NDA Study is expected to be created.
Data Expected List: Mandatory Data Structures

These data structures are mandatory for your NDA Collection. Please update the Targeted Enrollment number to accurately represent the number of subjects you expect to submit for the entire study.

For NIMH HIV-related research that involves human research participants: Select the dictionary or dictionaries most appropriate for your research. If your research does not require all three data dictionaries, just ignore the ones you do not need. There is no need to delete extra data dictionaries from your NDA Collection. You can adjust the Targeted Enrollment column in the Data Expected tab to “0” for those unnecessary data dictionaries. At least one of the three data dictionaries must have a non-zero value.

Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Research Subject and Pedigree info icon
18605/13/2015
180
Approved
To create your project's Data Expected list, use the "+New Data Expected" to add or request existing structures and to request new Data Structures that are not in the NDA Data Dictionary.

If the Structure you need already exists, locate it and specify your dates and enrollment when adding it to your Data Expected list. If you require changes to the Structure you need, select the indicator stating "No, it requires changes to meet research needs," and upload a file containing your requested changes.

If the structure you need is not yet defined in the Data Dictionary, you can select "Upload Definition" and attach the necessary materials to request its creation.

When selecting the expected dates for your data, make sure to follow the standard Data Sharing Regimen and choose dates within the date ranges that correspond to your project start and end dates.

Please visit the Completing Your Data Expected Tutorial for more information.
Data Expected List: Data Structures per Research Aims

These data structures are specific to your research aims and should list all data structures in which data will be collected and submitted for this NDA Collection. Please update the Targeted Enrollment number to accurately represent the number of subjects you expect to submit for the entire study.

Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Mullen Scales of Early Learning info icon
10907/15/2008
101
Approved
Genomics/omics info icon
55107/15/2008
180
Approved
ABC Community info icon
3607/31/2012
0
Approved
Reynell Developmental Language Scales info icon
7107/15/2008
0
Approved
ADOS info icon
41107/15/2008
187
Approved
Simpson-Angus Rating Scale (SAS) info icon
3607/31/2012
0
Approved
ADI-R info icon
30307/15/2008
286
Approved
Childrens Yale-Brown OC Scale (CY-BOCS) info icon
15307/15/2008
0
Approved
Medical History info icon
16707/15/2008
216
Approved
Social Responsiveness Scale (SRS) info icon
67507/15/2008
0
Approved
Wechsler Abbreviated Scale of Intelligence (WASI) info icon
11607/15/2008
0
Approved
Genetic Test info icon
55107/15/2008
22
Approved
Interpersonal Reactivity Index info icon
13707/15/2008
0
Approved
Child and Adolescent Symptom Inventory (CASI) info icon
3607/31/2012
0
Approved
Social Communication Questionnaire (SCQ) info icon
13607/15/2008
0
Approved
Demographics info icon
12507/15/2008
0
Approved
Child Behavior Checklist (CBCL) info icon
17407/31/2012
0
Approved
M-CHAT info icon
18407/15/2014
0
Approved
Parenting Stress Index (PSI) info icon
7107/15/2008
0
Approved
Abnormal Involuntary Movement Scale (AIMS) info icon
3607/31/2012
0
Approved
Clinical Global Impression (CGI) info icon
3607/31/2012
0
Approved
Early Social Communication Scales (ESCS) info icon
7207/15/2008
0
Approved
Structured Play Assessment info icon
7207/31/2012
0
Approved
Screen for Childhood Anxiety Related Emotional Disorders (SCARED) info icon
1107/31/2012
0
Approved
Interpersonal Competence Scale (ICS) info icon
11407/31/2012
0
Approved
Wechsler Intelligence Scale for Children info icon
10807/15/2008
65
Approved
DAS-II: Differential Ability Scales info icon
7107/31/2012
0
Approved
MacArthur Bates Communicative Development Inventory info icon
9707/15/2008
0
Approved
Peabody Picture Vocabulary Test, Fourth Edition info icon
15807/15/2008
0
Approved
Wechsler Adult Intelligence Scale info icon
307/15/2008
0
Approved
Repetitive Behavior Scale - Revised (RBS-R) info icon
27007/15/2008
0
Approved
Intervention History info icon
12507/15/2008
0
Approved
Wechsler Preschool Primary Scale Intelligence (WPPSI) info icon
1707/15/2008
0
Approved
Stanford Binet info icon
1107/15/2008
29
Approved
Physical Exam info icon
17207/15/2008
193
Approved
Sensory Profile info icon
6507/31/2012
0
Approved
Behavior Rating Inventory of Executive Function (BRIEF) info icon
13007/15/2008
0
Approved
Clinical Evaluation of Language Fundamentals (CELF) info icon
17407/15/2008
0
Approved
Vineland (Parent and Caregiver) info icon
42107/15/2008
257
Approved
Imaging (Structural, fMRI, DTI, PET, microscopy) info icon
17207/15/2008
161
Approved
Parenting Daily Hassles info icon
7207/31/2012
0
Approved
EEG info icon
7207/15/2014
0
Approved
Structure not yet defined
No Status history for this Data Expected has been recorded yet
helpcenter.collection.data-expected-tab

NDA Help Center

Collection - Data Expected

The Data Expected tab displays the list of all data that NDA expects to receive in association with the Collection as defined by the contributing researcher, as well as the dates for the expected initial upload of the data, and when it is first expected to be shared, or with the research community. Above the primary table of Data Expected, any publications determined to be relevant to the data within the Collection are also displayed - members of the contributing research group can use these to define NDA Studies, connecting those papers to underlying data in NDA.

The tab is used both as a reference for those accessing shared data, providing information on what is expected and when it will be shared, and as the primary tracking mechanism for contributing projects. It is used by both contributing primary researchers, secondary researchers, and NIH Program and Grants Management staff.

Researchers who are starting their project need to update their Data Expected list to include all the Data Structures they are collecting under their grant and set their initial submission and sharing schedule according to the NDA Data Sharing Regimen.

To add existing Data Structures from the Data Dictionary, to request new Data Structure that are not in the Dictionary, or to request changes to existing Data Structures, click "+New Data Expected".

For step-by-step instructions on how to add existing Data Structures, request changes to an existing Structure, or request a new Data Structure, please visit the Completing Your Data Expected Tutorial.

If you are a contributing researcher creating this list for the first time, or making changes to the list as your project progress, please note the following:

  • Although items you add to the list and changes you make are displayed, they are not committed to the system until you Save the entire page using the "Save" button at the bottom of your screen. Please Save after every change to ensure none of your work is lost.
  • If you attempt to add a new structure, the title you provide must be unique - if another structure exists with the same name your change will fail.
  • Adding a new structure to this list is the only way to request the creation of a new Data Dictionary definition.

Frequently Asked Questions

  • What is an NDA Data Structure?
    An NDA Data Structure is comprised of multiple Data Elements to make up an electronic definition of an assessment, measure, questionnaire, etc will have a corresponding Data Structure.
  • What is the NDA Data Dictionary?
    The NDA Data Dictionary is comprised of electronic definitions known as Data Structures.

Glossary

  • Analyzed Data
    Data specific to the primary aims of the research being conducted (e.g. outcome measures, other dependent variables, observations, laboratory results, analyzed images, volumetric data, etc.) including processed images.
  • Data Item
    Items listed on the Data Expected list in the Collection which may be an individual and discrete Data Structure, Data Structure Category, or Data Structure Group.
  • Data Structure
    A defined organization and group of Data Elements to represent an electronic definition of a measure, assessment, questionnaire, or collection of data points. Data structures that have been defined in the NDA Data Dictionary are available at https://nda.nih.gov/general-query.html?q=query=data-structure
  • Data Structure Category
    An NDA term describing the affiliation of a Data Structure to a Category, which may be disease/disorder or diagnosis related (Depression, ADHD, Psychosis), specific to data type (MRI, eye tracking, omics), or type of data (physical exam, IQ).
  • Data Structure Group
    A Data Item listed on the Data Expected tab of a Collection that indicates a group of Data Structures (e.g., ADOS or SCID) for which data may be submitted instead of a specific Data Structure identified by version, module, edition, etc. For example, the ADOS Data Structure Category includes every ADOS Data Structure such as ADOS Module 1, ADOS Module 2, ADOS Module 1 - 2nd Edition, etc. The SCID Data Structure Group includes every SCID Data Structure such as SCID Mania, SCID V Mania, SCID PTSD, SCID-V Diagnosis, and more.
  • Evaluated Data
    A new Data Structure category, Evaluated Data is analyzed data resulting from the use of computational pipelines in the Cloud and can be uploaded directly back to a miNDAR database. Evaluated Data is expected to be listed as a Data Item in the Collection's Data Expected Tab.
  • Imaging Data
    Imaging+ is an NDA term which encompasses all imaging related data including, but not limited to, images (DTI, MRI, PET, Structural, Spectroscopy, etc.) as well as neurosignal data (EEG, fMRI, MEG, EGG, eye tracking, etc.) and Evaluated Data.
  • Initial Share Date
    Initial Submission and Initial Share dates should be populated according to the NDA Data Sharing Terms and Conditions. Any modifications to these will go through the approval processes outlined above. Data will be shared with authorized users upon publication (via an NDA Study) or 1-2 years after the grant end date specified on the first Notice of Award, as defined in the applicable Data Sharing Terms and Conditions.
  • Initial Submission Date
    Initial Submission and Initial Share dates should be populated according to these NDA Data Sharing Terms and Conditions. Any modifications to these will go through the approval processes outlined above. Data for all subjects is not expected on the Initial Submission Date and modifications may be made as necessary based on the project's conduct.
  • Research Subject and Pedigree
    An NDA created Data Structure used to convey basic information about the subject such as demographics, pedigree (links family GUIDs), diagnosis/phenotype, and sample location that are critical to allow for easier querying of shared data.
  • Submission Cycle
    The NDA has two Submission Cycles per year - January 15 and July 15.
  • Submission Exemption
    An interface to notify NDA that data may not be submitted during the upcoming/current submission cycle.

Collection Owners and those with Collection Administrator permission, may edit a collection. The following is currently available for Edit on this page:

Associated Studies

Studies that have been defined using data from a Collection are important criteria to determine the value of data shared. The number of subjects column displays the counts from this Collection that are included in a Study, out of the total number of subjects in that study. The Data Use column represents whether or not the study is a primary analysis of the data or a secondary analysis. State indicates whether the study is private or shared with the research community.

Study NameAbstractCollection/Study SubjectsData UsageState
Examining the validity of the use of ratio IQs in psychological assessments IQ tests are amongst the most used psychological assessments, both in research and clinical settings. For participants who cannot complete IQ tests normed for their age, ratio IQ scores (RIQ) are routinely computed and used as a proxy of IQ, especially in large research databases to avoid missing data points. However, because it has never been scientifically validated, this practice is questionable. In the era of big data, it is important to examine the validity of this widely used practice. In this paper, we use the case of autism to examine the differences between standard full-scale IQ (FSIQ) and RIQ. Data was extracted from four databases in which ages, FSIQ scores and subtests raw scores were available for autistic participants between 2 and 17 years old. The IQ tests included were the MSEL (N=12033), DAS-II early years (N=1270), DAS-II school age (N=2848), WISC-IV (N=471) and WISC-V (N=129). RIQs were computed for each participant as well as the discrepancy (DSC) between RIQ and FSIQ. We performed two linear regressions to respectively assess the effect of FSIQ and of age on the DSC for each IQ test, followed by additional analyses comparing age subgroups as well as FSIQ subgroups on DSC. Participants at the extremes of the FSIQ distribution tended to have a greater DSC than participants with average FSIQ. Furthermore, age significantly predicted the DSC, with RIQ superior to FSIQ for younger participants while the opposite was found for older participants. These results question the validity of this widely used alternative scoring method, especially for individuals at the extremes of the normal distribution, with whom RIQs are most often employed.166/17423Secondary AnalysisShared
The evolution and population diversity of human-specific segmental duplicationsSegmental duplications contribute to human evolution, adaptation and genomic instability but are often poorly characterized. We investigate the evolution, genetic variation and coding potential of human-specific segmental duplications (HSDs). We identify 218 HSDs based on analysis of 322 deeply sequenced archaic and contemporary hominid genomes. We sequence 550 human and nonhuman primate genomic clones to reconstruct the evolution of the largest, most complex regions with protein-coding potential (n=80 genes/33 gene families). We show that HSDs are non-randomly organized, associate preferentially with ancestral ape duplications termed “core duplicons”, and evolved primarily in an interspersed inverted orientation. In addition to Homo sapiens-specific gene expansions (e.g., TCAF1/2), we highlight ten gene families (e.g., ARHGAP11B and SRGAP2C) where copy number never returns to the ancestral state, there is evidence of mRNA splicing, and no common gene-disruptive mutations are observed in the general population. Such duplicates are candidates for the evolution of human-specific adaptive traits. 1/6360Primary AnalysisShared
The importance of low IQ to early diagnosis of autismSome individuals can flexibly adapt to life’s changing demands while others, in particular those with Autism Spectrum Disorder (ASD), find it challenging. The origin of early individual differences in cognitive abilities, the putative tools with which to navigate novel information in life, including in infants later diagnosed with ASD remains unexplored. Moreover, the role of intelligence quotient (IQ) vis-à-vis core features of autism remains debated. We systematically investigate the contribution of early IQ in future autism outcomes in an extremely large, population-based study of 8,000 newborns, infants, and toddlers from the US between 2 and 68 months with over 15,000 cross-sectional and longitudinal assessments, and for whom autism outcomes are ascertained or ruled out by about 2-4 years. This population is representative of subjects involved in the National Institutes of Health (NIH)-funded research, mainly on atypical development, in the US. Analyses using predetermined age bins showed that IQ scores are consistently lower in ASD relative to TD at all ages (p<0.001), and IQ significantly correlates with calibrated severity scores (total CSS, as well as non-verbal and verbal CSS) on the ADOS. Note, VIQ is no better than the full-scale IQ to predict ASD cases. These findings raise new, compelling questions about potential atypical brain circuitry affecting performance in both verbal and nonverbal abilities and that precede an ASD diagnosis. This study is the first to establish prospectively that low early IQ is a major feature of ASD in early childhood. 84/6323Secondary AnalysisShared
Prognostic early snapshot stratification of autism based on adaptive functioningA major goal of precision medicine is to predict prognosis based on individualized information at the earliest possible points in development. Using early snapshots of adaptive functioning and unsupervised data- driven discovery methods, we uncover highly stable early autism subtypes that yield information relevant to later prognosis. Data from the National Institute of Mental Health Data Archive (NDA) (n = 1,098) was used to uncover three early subtypes (<72 months) that generalize with 96% accuracy. Outcome data from NDA (n = 2,561; mean age, 13 years) also reproducibly clusters into three subtypes with 99% generalization accuracy. Early snapshot subtypes predict developmental trajectories in non-verbal cognitive, language and motor domains and are predictive of membership in different adaptive functioning outcome subtypes. Robust and prognosis- relevant subtyping of autism based on early snapshots of adaptive functioning may aid future research work via prediction of these subtypes with our reproducible stratification model.16/3517Secondary AnalysisShared
Unravelling the Collective Diagnostic Power Behind the Features in the Autism Diagnostic Observation ScheduleBackground: Autism is a group of heterogeneous disorders defined by deficits in social interaction and communication. Typically, diagnosis depends on the results of a behavioural examination called the Autism Diagnostic Observation Schedule (ADOS). Unfortunately, administration of the ADOS exam is time-consuming and requires a significant amount of expert intervention, leading to delays in diagnosis and access to early intervention programs. The diagnostic power of each feature in the ADOS exam is currently unknown. Our hypothesis is that certain features could be removed from the exam without a significant reduction in diagnostic accuracy, sensitivity or specificity. Objective: Determine the smallest subset of predictive features in ADOS module-1 (an exam variant for patients with minimal verbal skills). Methodology: ADOS module-1 datasets were acquired from the Autism Genetic Resource Exchange and the National Database for Autism Research. The datasets contained 2572 samples with the following labels: autism (1763), autism spectrum (513), and non-autism (296). The datasets were used as input to 4 different cost-sensitive classifiers in Weka (functional trees, LADTree, logistic model trees, and PART). For each classifier, a 10-fold cross validation was preformed and the number of predictive features, accuracy, sensitivity, and specificity was recorded. Results & Conclusion: Each classifier resulted in a reduction of the number of ADOS features required for autism diagnosis. The LADtree classifier was able to obtain the largest reduction, utilizing only 10 of 29 ADOS module-1 features (96.8% accuracy, 96.9% sensitivity, and 95.9% specificity). Overall, these results are a step towards a more efficient behavioural exam for autism diagnosis. 3/1832Secondary AnalysisShared
Imbalanced social-communicative and restricted repetitive behavior subtypes in autism spectrum disorder exhibit different neural circuitrySocial-communication (SC) and restricted repetitive behaviors (RRB) are autism diagnostic symptom domains. SC and RRB severity can markedly differ within and between individuals and may be underpinned by different neural circuitry and genetic mechanisms. Modeling SC-RRB balance could help identify how neural circuitry and genetic mechanisms map onto such phenotypic heterogeneity. Here, we developed a phenotypic stratification model that makes highly accurate (97–99%) out-of-sample SC = RRB, SC > RRB, and RRB > SC subtype predictions. Applying this model to resting state fMRI data from the EU-AIMS LEAP dataset (n = 509), we find that while the phenotypic subtypes share many commonalities in terms of intrinsic functional connectivity, they also show replicable differences within some networks compared to a typically-developing group (TD). Specifically, the somatomotor network is hypoconnected with perisylvian circuitry in SC > RRB and visual association circuitry in SC = RRB. The SC = RRB subtype show hyperconnectivity between medial motor and anterior salience circuitry. Genes that are highly expressed within these networks show a differential enrichment pattern with known autism-associated genes, indicating that such circuits are affected by differing autism-associated genomic mechanisms. These results suggest that SC-RRB imbalance subtypes share many commonalities, but also express subtle differences in functional neural circuitry and the genomic underpinnings behind such circuitry.14/1708Secondary AnalysisShared
Derivation of Brain Structure Volumes from MRI Neuroimages hosted by NDAR using C-PAC pipeline and ANTsAn automated pipeline was developed to reference Neuroimages hosted by the National Database for Autism Research (NDAR) and derive volumes for distinct brain structures using Advanced Normalization Tools (ANTs) and the Configurable-Pipeline for the Analysis of Connectomes (C-PAC) platform. This pipeline utilized the ANTs cortical thickness methodology discuessed in "Large-Scale Evaluation of ANTs and Freesurfer Cortical Tchickness Measurements" [http://www.ncbi.nlm.nih.gov/pubmed/24879923] to extract a cortical thickness volume from T1-weighted anatomical MRI data gathered from the NDAR database. This volume was then registered to an stereotaxic-space anatomical template (OASIS-30 Atropos Template) which was acquired from the Mindboggle Project webpage [http://mindboggle.info/data.html]. After registration, the mean cortical thickness was calculated at 31 ROIs on each hemisphere of the cortex and using the Desikan-Killiany-Tourville (DKT-31) cortical labelling protocol [http://mindboggle.info/faq/labels.html] over the OASIS-30 template. **NOTE: This study is ongoing; additional data my be available in the future.** As a result, each subject that was processed has a cortical thickness volume image and a text file with the mean thickness ROIs (in mm) stored in Amazon Web Services (AWS) Simple Storage Service (S3). Additionally, these results were tabulated in an AWS-hosted database (through NDAR) to enable simple, efficient querying and data access. All of the code used to perform this analysis is publicly available on Github [https://github.com/FCP-INDI/ndar-dev]. Additionally, as a computing platform, we developed an Amazon Machine Image (AMI) that comes fully equipped to run this pipeline on any dataset. Using AWS Elastic Cloud Computing (EC2), users can launch our publicly available AMI ("C-PAC with benchmark", AMI ID: "ami-fee34296", N. Virginia region) and run the ANTs cortical thickness pipeline. The AMI is fully compatible with Sun Grid Engine as well; this enables users to perform many pipeline runs in parallel over a cluster-computing framework.107/1428Secondary AnalysisShared
Derivation of Brain Structure Volumes from MRI Neuroimages hosted by NDAR using LONI WorkflowsLONI utilized de-identified data from NDAR's cloud and a LONI Pipeline (pipeline.loni.usc.edu) processing workflow to perform a secondary structural MRI examination. The workflow used in this study pulls data from and provided by NDAR to an instance on the LONI compute cluster, aligns data to a standard orientation using FSLreorient2stsd, and undergoes further image processing to eventually identify, extract, and analyze cortical and sub-cortical structures in different MRI brain volumes. Two methods were used for this image processing: the first uses Freesurfer Recon_All to extract brain cortical parcellation and surfaces, align the data to an atlas, and identify, and analyze regions of interest; the second uses FSL to extract the brain (BET), align the data to an atlas, and extract ROIs including sub-cortical regions using FSL FIRST. The second method also uses Freesurfer (mri_segstats) to perform statistical analysis of these ROIs. Lastly, the LONI Pipeline workflow updates and returns the data processed and extracted by Freesurfer and FSL as a miNDAR back to NDAR's cloud storage instance. These results can be used to assess quality control or be used to perform post-hoc comparisons of cortical and sub-cortical brain architecture between subject types. See also, Torgerson et al. (2015) Brain Imaging and Behavior, for additional details on using LONI Pipeline to access and process NDAR data.106/740Secondary AnalysisShared
Derivation of Quality Measures for Structural Images by Neuroimaging PipelinesUsing the National Database for Autism Research cloud platform, MRI data were analyzed using neuroimaging pipelines that included packages available as part of the Neuroimaging Informatics Tools and Resources Clearinghouse (NITRC) Computational Environment to derive standardized measures of MR image quality. Structural QA was performed according to Haselgrove, et al (http://journal.frontiersin.org/Journal/10.3389/fninf.2014.00052/abstract) to provide values for Signal to Noise (SNR) and Contrast to Noise (CNR) Ratios that can be compared between subjects within NDAR and between other public data releases.108/423Secondary AnalysisShared
Derivation of Brain Structure Volumes from MRI Neuroimages hosted by NDAR using NITRC-CEA draft publication is in progress. GitHub repository with code for working with NDAR Data is available here: https://github.com/chaselgrove/ndar **Note this study is ongoing; additional may be added.**107/356Secondary AnalysisShared
Derivation of Quality Measures for Time-Series Images by Neuroimaging PipelinesUsing the National Database for Autism Research cloud platform, MRI data were analyzed using neuroimaging pipelines that included packages available as part of the Neuroimaging Informatics Tools and Resources Clearinghouse (NITRC) Computational Environment to derive standardized measures of MR image quality. Time series QA was performed according to Friedman, et al. (http://www.ncbi.nlm.nih.gov/pubmed/16952468) providing values for Signal to Noise Ratio that can be compared to other subjects.107/356Secondary AnalysisShared
comparing EEG metrics during eyes closed versus eyes open rest in autismUnderstanding the complex relationship between brain dynamics and mental disorders has proved difficult. Sample sizes have often been small, and brain dynamics have often been evaluated in only one state. Here, data obtained from the NIMH data archive were used to create a sample of 395 individuals with both eyes open and eyes closed resting state EEG data. All data were submitted to a standard pipeline to extract power spectra, peak alpha frequency, the slope of the 1/f curve, multi scale sample entropy, phase amplitude coupling, and intersite phase clustering. These data along with the survey data collected at the time of data collection form a valuable resource for interogating the relationship between brain state changes and autism diagnosis.3/336Secondary AnalysisShared
Cortico-Basal Ganglia Brain Structure and Links to Restricted, Repetitive Behavior in Autism Spectrum DisorderRestricted repetitive behavior (RRB) is one of two criteria domains required for the diagnosis of autism spectrum disorder (ASD). Neuroimaging is widely used to study brain alterations associated with ASD and the domain of social and communication deficits, but there has been less work regarding alterations associated with RRB. In this study we utilized neuroimaging data available from the National Database for Autism Research to assess volume in the basal ganglia and cerebellum, as well as microstructure in basal ganglia and cerebellar white matter tracts in ASD. We also investigated whether these measures differed between males and females with ASD, and how these factors correlated with clinical measures of RRB from the same individuals. We found that individuals with ASD had significant differences in free-water corrected fractional anisotropy (FAT) and free-water in cortico-basal ganglia white matter tracts, but that these measures did not differ between males versus females with ASD. Moreover, both FAT and free-water in these tracts were significantly correlated with measures of RRB. Despite no differences in volumetric measures in basal ganglia and cerebellum, these findings suggest the links between RRB and brain structure are within specific cortico-basal ganglia white matter tracts.2/192Secondary AnalysisShared
* Data not on individual level
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Collection - Associated Studies

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