Loading...

Reset Password

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.

Warning Notice

This is a U.S. Government computer system, which may be accessed and used only for authorized Government business by authorized personnel. Unauthorized access or use of this computer system may subject violators to criminal, civil, and/or administrative action.

All information on this computer system may be intercepted, recorded, read, copied, and disclosed by and to authorized personnel for official purposes, including criminal investigations. Such information includes sensitive data encrypted to comply with confidentiality and privacy requirements. Access or use of this computer system by any person, whether authorized or unauthorized, constitutes consent to these terms. There is no right of privacy in this system.

You have logged in with a temporary password. Please update your password. Passwords must contain 8 or more characters and must contain at least 3 of the following types of characters:

Subscribe to our mailing list

Mailing List(s)
Email Format

You are now leaving the National Database for Autism Research (NDAR) web site to go to:

Click on the address above if the page does not change within 10 seconds.

Disclaimer

NDAR is not responsible for the content of this external site and does not monitor other web sites for accuracy.

Selected Filters
No filters selected

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.

If you have a question about the filter cart, or underlying filters please contact the help desk at The NDA Help Desk

Description
Value Range
Notes
Data Structures with shared data
No filters have been selected

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

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
CBT for Anxiety in Adolescents with Autism
Eric A. Storch, Ph.D. 
The purpose of the research study is to see how well a cognitive-behavioral psychotherapy program works to reduce anxiety in adolescents with autism spectrum disorders. This collection will contain data associated with this project. Including but not limited to the: ADIS, PARS, SACA, ADI-R, ADOS, WISC, and various self report measures completed by the parents and adolescents.
NDAR
Closed
Shared
$423,402.00
28
26
9

Loading...

Loading...

No Data Shared

Loading...

Chart Expander
NIH - Extramural None


R34HD065274-01 2/3 CBT for Anxiety Disorders in Autism: Adapting Treatment for Adolescents 09/21/2009 08/31/2011 26 9 UNIVERSITY OF SOUTH FLORIDA $423,402.00

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.

Anxiety Disorders Interview Schedule Parent (ADIS IV P) Clinical Assessments 27
Autism Diagnostic Interview, Revised (ADI-R) Clinical Assessments 21
Autism Diagnostic Observation Schedule (ADOS)- Module 3 Clinical Assessments 18
Child Behavior Checklist (CBCL) 6-18 Clinical Assessments 27
Clinical Global Impression (CGI) Clinical Assessments 27
Columbia Impairment Scale (CIS) Parent Reported Clinical Assessments 26
Columbia Impairment Scale (CIS) Youth Reported Clinical Assessments 27
Expectancy Rating Questionnaire (ERQ) Clinical Assessments 26
Loneliness Rating Scale (LRS) Clinical Assessments 27
Multidimensional Adolescent Satisfaction Scale (MASS) Clinical Assessments 19
Multidimensional Anxiety Scale for Children Parent and Self Clinical Assessments 27
Pediatric Anxiety Rating Scale (PARS) Clinical Assessments 26
Peer Experiences Questionnaire Revised (PEQ-R) Clinical Assessments 27
Revised Child Anxiety and Depression Scale (RCADS) Clinical Assessments 27
Service Assess for Child Adolescents Service Use Scale (SACA) Clinical Assessments 27
Social Communication Questionnaire (SCQ) - Current Form Clinical Assessments 27
Social Responsiveness Scale (SRS) Clinical Assessments 27
Therapist Alliance Scale Child and Parent Reports (TAS C P T) Clinical Assessments 22
Wechsler Intelligence Scale for Children - IV [part 1] Clinical Assessments 8

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
26031924Create StudyDefining treatment response and symptom remission for anxiety disorders in pediatric autism spectrum disorders using the Pediatric Anxiety Rating Scale.Journal of autism and developmental disordersJohnco CJ, De Nadai AS, Lewin AB, Ehrenreich-May J, Wood JJ, Storch EAOctober 2015Not Determined
25239284Create StudyFrequency and Clinical Correlates of Sleep-Related Problems Among Anxious Youth with Autism Spectrum Disorders.Child psychiatry and human developmentNadeau JM, Arnold EB, Keene AC, Collier AB, Lewin AB, Murphy TK, Storch EAAugust 2015Not Relevant
25150567Create StudyPediatric acute-onset neuropsychiatric syndrome.The Psychiatric clinics of North AmericaMurphy TK, Gerardi DM, Leckman JFSeptember 2014Not Relevant
24683302Create StudyInter-rater Reliability of the Anxiety Disorders Interview Schedule for DSM-IV in High-Functioning Youth with Autism Spectrum Disorder.Journal of developmental and physical disabilitiesUng D, Arnold EB, De Nadai AS, Lewin AB, Phares V, Murphy TK, Storch EAFebruary 1, 2014Not Determined
24179485Create StudyClinical characteristics of high-functioning youth with autism spectrum disorder and anxiety.NeuropsychiatryUng D, Wood JJ, Ehrenreich-May J, Arnold EB, Fuji C, Renno P, Murphy TK, Lewin AB, Mutch PJ, Storch EAApril 2013Not Determined
24174992Create StudyTreatment of comorbid anxiety and autism spectrum disorders.NeuropsychiatryNadeau J, Sulkowski ML, Ung D, Wood JJ, Lewin AB, Murphy TK, May JE, Storch EADecember 2011Not Determined
23446993Create StudyThe phenomenology and clinical correlates of suicidal thoughts and behaviors in youth with autism spectrum disorders.Journal of autism and developmental disordersStorch EA, Sulkowski ML, Nadeau J, Lewin AB, Arnold EB, Mutch PJ, Jones AM, Murphy TKOctober 2013Not Determined
22856332Create StudyMultiple informant agreement on the anxiety disorders interview schedule in youth with autism spectrum disorders.Journal of child and adolescent psychopharmacologyStorch EA, Ehrenreich May J, Wood JJ, Jones AM, De Nadai AS, Lewin AB, Arnold EB, Murphy TKAugust 2012Not Determined
22407279Create StudyThe role of co-occurring disruptive behavior in the clinical presentation of children and adolescents with anxiety in the context of autism spectrum disorders.Child psychiatry and human developmentStorch EA, Arnold EB, Jones AM, Ale CM, Wood JJ, Ehrenreich-May J, Lewin AB, Mutch PJ, Murphy TKOctober 2012Not Determined
22395820Create StudyConvergent and discriminant validity and reliability of the pediatric anxiety rating scale in youth with autism spectrum disorders.Journal of autism and developmental disordersStorch EA, Wood JJ, Ehrenreich-May J, Jones AM, Park JM, Lewin AB, Murphy TKNovember 2012Not 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
ADOS info iconApproved
Research Subject and Pedigree info iconApproved
Expectancy Rating Questionnaire (ERQ) info iconApproved
Loneliness Rating Scale (LRS) info iconApproved
Multidimensional Adolescent Satisfaction Scale (MASS) info iconApproved
Pediatric Anxiety Rating Scale (PARS) info iconApproved
Peer Experiences Questionnaire Revised (PEQ-R) info iconApproved
Child Anxiety and Depression Scale - Revised (RCADS) info iconApproved
Services Assessment for Children and Adolescents (SACA) info iconApproved
Social Responsiveness Scale (SRS) info iconApproved
Therapist Alliance Scale Child and Parent Reports (TAS C P) info iconApproved
ADI-R info iconApproved
Wechsler Intelligence Scale for Children info iconApproved
Child Behavior Checklist (CBCL) info iconApproved
Clinical Global Impression (CGI) info iconApproved
Columbia impairment scale (CIS) info iconApproved
Anxiety Disorders Interview Schedule 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
The Sensitivity and Specificity of the Social Communication Questionnaire for Autism Spectrum Disorder with Respect to Age Scientific Abstract The Social Communication Questionnaire (SCQ) assesses communication skills and social functioning in screening for symptoms of autism-spectrum disorder (ASD). The SCQ is recommended for individuals between 4 to 40 years with a cutoff score of 15 for referral. Mixed findings have been reported regarding the recommended cutoff score’s ability to accurately classify an individual as at-risk for ASD (sensitivity) versus an individual as not at-risk for ASD (specificity). Based on a sample from the National Database for Autism Research (n=344; age: 1.58 to 25.92 years old), the present study examined the SCQ’s sensitivity versus specificity across a range of ages. We recommend that the cutoff scores for the SCQ be re-evaluated with age as a consideration. Lay Abstract The age neutrality of the Social Communication Questionnaire (SCQ) was examined as a common screener for ASD. Mixed findings have been reported regarding the recommended cutoff score’s ability to accurately classify an individual as at-risk for ASD (sensitivity) versus accurately classifying an individual as not at-risk for ASD (specificity). With a sample from the National Database for Autism Research, the present study examined the SCQ’s sensitivity versus specificity. Analyses indicated that the actual sensitivity and specificity scores were lower than initially reported by the creators of the SCQ. 2 / 339 Secondary Analysis Shared
Convergent and Discriminant Validity and Reliability of the Pediatric Anxiety Rating Scale in Youth with Autism Spectrum Disorders The psychometric properties of the Pediatric Anxiety Rating Scale (PARS), a clinician-administered measure for assessing severity of anxiety symptoms, were examined in 72 children and adolescents diagnosed with an autism spectrum disorder (ASD). The internal consistency of the PARS was 0.59, suggesting that the items were related but not repetitive.The PARS was strongly correlated with clinician-ratings of overall anxiety severity and parent- report anxiety measures, supporting convergent validity. Results for divergent validity were mixed. Although the PARS was not associated with the sum of the Social and Communication items on the Autism Diagnostic Observation System, it was moderately correlated with parent-reported inattention, aggression and externalizing behavior. Overall, these results suggest that the psychometric properties of the PARS are adequate for assessing anxiety symptoms in youth with ASD, although additional clarification of divergent validity is needed. 27 / 54 Primary 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. 17 / 1021 Secondary Analysis Shared
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. 27 / 2134 Secondary Analysis Shared
* Data not on individual level