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NDAR provides a single access to de-identified autism research data. For permission to download data, you will need an NDAR account with approved access to NDAR or a connected repository (AGRE, IAN, or the ATP). For NDAR access, you need to be a research investigator sponsored by an NIH recognized institution with federal wide assurance. See Request Access for more information.

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The filters you have selected from various query interfaces will be stored here, in the 'Filter Cart'. The database will be queried using filters added to your 'Filter Cart', when multiple filters are defined, each will be executed using 'AND' logic, so with each filter that is applied the result set gets smaller.

From the 'Filter Cart' you can inspect each of the filters that have been defined, and you also have the option to remove filters. The 'Filter Cart' itself will display the number of filters applied along with the number of subjects that are identified by the combination of those filters. For example a GUID filter with two subjects, followed by a GUID filter for just one of those subjects would return only data for the subject that is in both GUID filters.

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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

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New Documentation

Please enter the name of the data structure to search or if your definition does not exist, please upload that definition so that it can be appropriately defined for submission. Multiple data structures may be associated with a single Data Expected entry. Please add only one data structure per assessment.

Please provide a reason for the requested submission exemption and the
time-frame during which the exemption will be active.
Shared

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

General

Title, investigators, and Collection Description may be edited along with the Collection Phase. For Collection Phase, the options Pre-enrollment, Enrollment, and Completed can be chosen allowing the Collection Owner to indicate the stage of data collection.

Funding Source

The ability to associate the funding source for the project is provided. For NIH funded grants, linkage to Project Reporter information (e.g. R01MH123456) is supported. Projects funded by others, including the URL of the project, are listed. Non NIH funded projects will become available here to link that data with the appropriate funding agency.

Supporting Documentation

Any documents related to the project may be uploaded clarifying the data or acquisition methods used may be uploaded and made available here. The default is to share these documents to the general public. An option to share only to qualified Researchers is also an option.

Clinical Trials

For clinical trials, the option to link to the clinical trial in clinicaltrials.gov is optionally provided.

Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
Functional Neuroimaging of Attention in Autism
Benjamin Yerys 
The proposed study will use functional MRI and rest state MRI along with novel, data-driven methods to examine brain networks disrupted in children with ASD and ADHD symptoms. This approach has two distinct advantages: 1) a basal ganglia-thalamocortical loop tapped by response inhibition is well- defined and known to be disrupted in children with prototypical ADHD; and 2) our data-driven methods make no a priori assumptions about potential sub-groups identified or connectivity among brain regions. We will examine the presence of ADHD symptoms and inhibitory control in everyday settings in 8-10-year-old children with ASD (n=30) and typically developing controls (n=15). These children will complete fMRI and resting state scans to examine functional neuroanatomy and functional connectivity of response inhibition.
NDAR
Closed
Shared
$426,605.00
75
55
0

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NIH - Extramural None


R21MH092615-01 Functional Neuroimaging of Attention in Autism 09/01/2011 08/31/2013 55 Not Reported CHILDRENS HOSP OF PHILADELPHIA $426,605.00

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

Experiments

To create a new Omics, eye tracking, fMRI, or EEG experiment, press the "+ New Experiment" button. Once an experiment is created, then raw files for these types of experiments should be provided, associating the experiment – through Experiment_ID – with the metadata defined in the experiments interface.

IDNameCreated DateStatusType
No records found.

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

Shared Data

Data structures with the number of subjects submitted and shared are provided.

Autism Diagnostic Interview, Revised (ADI-R) Clinical Assessments 34
Autism Diagnostic Observation Schedule (ADOS) - Module 4 Clinical Assessments 3
Autism Diagnostic Observation Schedule (ADOS)- Module 3 Clinical Assessments 36
BASC Parent Rating Scale Adolescent Clinical Assessments 20
BRIEF-Parent Clinical Assessments 15
DAS-II: Differential Ability Scales 2nd Ed. School Age Clinical Assessments 56
Edinburgh Handedness Inventory Clinical Assessments 61
Repetitive Behavior Scale - Revised (RBS-R) Clinical Assessments 49
Research Subject Clinical Assessments 72
Social Communication Questionnaire (SCQ) - Lifetime Clinical Assessments 69
Social Responsiveness Scale (SRS) Clinical Assessments 72
Vineland-II - Parent and Caregiver Rating Form (2005) Clinical Assessments 67

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 NDAR 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
27738853Create StudyEvaluation of the ADHD Rating Scale in Youth with Autism.Journal of autism and developmental disordersYerys BE, Nissley-Tsiopinis J, De Marchena A, Watkins MW, Antezana L, Power TJ, Schultz RTOctober 2016Not Determined
27500721Create StudyRefractory Status Epilepticus in Children: Intention to Treat With Continuous Infusions of Midazolam and Pentobarbital.Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care SocietiesTasker RC, Goodkin HP, Sánchez Fernández I, Chapman KE, Abend NS, Arya R, Brenton JN, Carpenter JL, Gaillard WD, Glauser TA, Goldstein J, Helseth AR, Jackson MC, Kapur K, Mikati MA, Peariso K, Wainwright MS, Wilfong AA, Williams K, Loddenkemper T, October 2016Not Determined
26586556Create StudySocial-Emotional Inhibition of Return in Children with Autism Spectrum Disorder Versus Typical Development.Journal of autism and developmental disordersAntezana L, Mosner MG, Troiani V, Yerys BEApril 2016Not Determined
26385796Create StudyReplication and Comparison of the Newly Proposed ADOS-2, Module 4 Algorithm in ASD Without ID: A Multi-site Study.Journal of autism and developmental disordersPugliese CE, Kenworthy L, Bal VH, Wallace GL, Yerys BE, Maddox BB, White SW, Popal H, Armour AC, Miller J, Herrington JD, Schultz RT, Martin A, Anthony LGDecember 2015Not Determined
26122601Create StudySummary of recommendations for the management of infantile seizures: Task Force Report for the ILAE Commission of Pediatrics.EpilepsiaWilmshurst JM, Gaillard WD, Vinayan KP, Tsuchida TN, Plouin P, Van Bogaert P, Carrizosa J, Elia M, Craiu D, Jovic NJ, Nordli D, Hirtz D, Wong V, Glauser T, Mizrahi EM, Cross JHAugust 2015Not Determined
25779538Create StudyHow should children with West syndrome be efficiently and accurately investigated? Results from the National Infantile Spasms Consortium.EpilepsiaWirrell, Elaine C; Shellhaas, Renée A; Joshi, Charuta; Keator, Cynthia; Kumar, Shilpi; Mitchell, Wendy G; Pediatric Epilepsy Research ConsortiumApril 2015Not Relevant
25599972Create StudyNeural Correlates of Set-Shifting in Children With Autism.Autism research : official journal of the International Society for Autism ResearchYerys, Benjamin E; Antezana, Ligia; Weinblatt, Rachel; Jankowski, Kathryn F; Strang, John; Vaidya, Chandan J; Schultz, Robert T; Gaillard, William D; Kenworthy, LaurenAugust 2015Not Relevant
25516399Create StudyReduced language connectivity in pediatric epilepsy.EpilepsiaSepeta, Leigh N; Croft, Louise J; Zimmaro, Lauren A; Duke, Elizabeth S; Terwilliger, Virginia K; Yerys, Benjamin E; You, Xiaozhen; Vaidya, Chandan J; Gaillard, William D; Berl, Madison MFebruary 2015Not Relevant
25260934Create StudyMultimodal imaging in autism: an early review of comprehensive neural circuit characterization.Current psychiatry reportsYerys BE, Herrington JDNovember 2014Not Determined
25255899Create StudyAbstract analogical reasoning in high-functioning children with autism spectrum disorders.Autism research : official journal of the International Society for Autism ResearchGreen AE, Kenworthy L, Mosner MG, Gallagher NM, Fearon EW, Balhana CD, Yerys BEDecember 2014Not Determined
25103541Create StudyStriatal development in autism: repetitive behaviors and the reward circuitry.Biological psychiatryKohls G, Yerys BE, Schultz RTSeptember 1, 2014Not Determined
24183923Create StudyGaps and opportunities in refractory status epilepticus research in children: a multi-center approach by the Pediatric Status Epilepticus Research Group (pSERG).SeizureSánchez Fernández I, Abend NS, Agadi S, An S, Arya R, Carpenter JL, Chapman KE, Gaillard WD, Glauser TA, Goldstein DB, Goldstein JL, Goodkin HP, Hahn CD, Heinzen EL, Mikati MA, Peariso K, Pestian JP, Ream M, Riviello JJ, Tasker RC, Williams K, Loddenkemper T, Pediatric Status Epilepticus Research Group (pSERG)February 2014Not Determined
23937480Create StudySeparate components of emotional go/no-go performance relate to autism versus attention symptoms in children with autism.NeuropsychologyYerys BE, Kenworthy L, Jankowski KF, Strang J, Wallace GLSeptember 2013Not Determined
23283628Create StudyReal world executive control impairments in preschoolers with autism spectrum disorders.Journal of autism and developmental disordersSmithson PE, Kenworthy L, Wills MC, Jarrett M, Atmore K, Yerys BEAugust 2013Not Determined

This tab provides a general status on the data expected to be shared. There are two types of data expected.

  1. By Relevant publications — Those publications that reported for the collection's grant and have a status of "relevant" for sharing are listed first. The grantee is expected to share the data specific to those publications using the NDA Study feature. If a publication is erroneously marked relevant, the PI should simply change the status. When sharing a study, only the outcome measures for the subjects/time-points are shared. Other data that have not met the share date, defined below, will remain embargoed. To initiate study creation, simply login, mark your publication as relevant and click on the link listed to begin.

  2. By Data Structure — The number of subjects expected, received and shared is provided. Investigators are expected to update the data that they are collecting, the initial submission date and initial share dates. The NIMH Data Archive shares data when those dates are met.

  3. Submission Exemption — Those with Administrative or Submission Access to the Collection may request an exemption for submission for a defined period by stating the reason and timeframe. Note that the program officer on the grant may review this request.


Relevant Publications
PubMed IDStudyTitleJournalAuthorsDate
No records found.

For those with privileges to edit the collection, it is possible to upload your data definitions using this interface. NDA support staff will then follow up with a harmonized data definition for you to use in providing additional data.

Data Expected
Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
DAS-II: Differential Ability Scales info iconApproved
ADOS info iconApproved
Child and Adolescent Symptom Inventory (CASI) info iconApproved
Behavior Assessment System for Children (BASC) info iconApproved
ADHD Rating Scale info iconApproved
Social Responsiveness Scale (SRS) info iconApproved
Physical Exam info iconApproved
ADI-R info iconApproved
Vineland (Parent and Caregiver) info iconApproved
Repetitive Behavior Scale - Revised (RBS-R) info iconApproved
Social Communication Questionnaire (SCQ) info iconApproved
Behavior Rating Inventory of Executive Function (BRIEF) info iconApproved
Research Subject and Pedigree info iconApproved
Imaging (Structural, fMRI, DTI, PET, microscopy) info iconApproved
Structure not yet defined

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 Name Description Number of Subjects
Collection / Total
Data Use State
Psychometric Analysis of the Social Communication Questionnaire Using an Item-Response Theory Framework: Implications for the Use of the Lifetime and Current Forms The Social Communication Questionnaire (SCQ) was developed as a screener of Autism Spectrum Disorder (ASD). To date, the majority of the SCQ utility studies focused on its external validity (e.g., ROC curve analyses), but very few have addressed the internal validity issues. With samples consisting of 2,134 individuals available from the National Database for Autism Research (NDAR), the current study examined the factor structure, item-level characteristics, and measurement equivalence of the SCQ forms (i.e., Lifetime form and Current form) using both the classical true score theory and the item response theory (IRT). While our findings indicate sufficient psychometric properties of the SCQ Lifetime form, measurement issues emerged with respect to the SCQ Current form. These issues include lower internal consistencies, a weaker factor structure, lower item discriminations, significant pseudo-guessing effects, and subscale-level measurement bias. Thus, we caution researchers and clinicians about the use of the SCQ Current form. In particular, it seems inappropriate to use the Current form as an alternative to the Lifetime form among children younger than 5 years old or under other special situations (e.g., teacher-report data), although such practices were advised by the publisher of the SCQ. Instead, we recommend modifying the wording of the Lifetime form items rather than switching to the Current form where a 3-month timeframe is specified for responding to SCQ items. Future studies may consider investigating the association between the temporality of certain behaviors and the individual’s potential for being diagnosed with ASD, as well as the age neutrality of the SCQ. 32 / 2134 Secondary Analysis Shared
Revising the Social Communication Questionnaire scoring procedures for Autism Spectrum Disorder and potential Social Communication Disorder In analyzing data from the National Database for Autism Research, we examine revising the Social Communication Questionnaire (SCQ), a commonly used screening instrument for Autism Spectrum Disorder. A combination of Item Response Theory and Mokken scaling techniques were utilized to achieve this and abbreviated scoring of the SCQ is suggested. The psychometric sensitivity of this abbreviated SCQ was examined via bootstrapped Receiver Operator Characteristic (ROC) curve analyses. Additionally, we examined the sensitivity of the abbreviated and total scaled SCQ as it relates to a potential diagnosis of Social (Pragmatic) Communication Disorder (SCD). As SCD is a new disorder introduced with the fifth edition of the Diagnostic and Statistical Manual (DSM-5), we identified individuals with potential diagnosis of SCD among individuals with ASD via mixture modeling techniques using the same NDAR data. These analyses revealed two classes or clusters of individuals when considering the two core areas of impairment among individuals with ASD: social communication and restricted, repetitive patterns of behavior. 26 / 1021 Secondary Analysis Shared
* Data not on individual level