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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.

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1 Numbers reported are subjects by age
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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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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
Smart Early Screening for Autism and Communication Disorders in Primary Care
Amy Wetherby 
There is a pressing need to build the capacity of communities to follow the guidelines of the American Academy of Pediatrics to screen all children for ASD at 18 and 24 months (Johnson & Myers, 2007) as research indicates that earlier intervention maximizes outcomes. In response to PA-10-158, the overarching purpose of this investigation is to validate the effectiveness of a new automated online version of the EarlyScreening for Autism and Communication Disorders the Smart ESAC, that uses smart technology to seamlessly transition from 10 broadband questions about communication delay to 20 autism-specific questionsfor children who screen positive on the initial broadband screen. The Smart ESAC is designed as a universal screen for communication delays and ASD at 12 and 18 months of age. We will conduct a large-scale longitudinal study of the validity of the Smart ESAC through community primary care providers (PCPs) in the Florida panhandle, which offers small urban and rural healthcare settings and diversity in race, ethnicity, and socioeconomic level. We will also study family engagement in screening and diagnosis to improve health disparities. We will recruit up to 32 PCPs who will implement screening with 8,424 infants at 12 months of age and follow these children longitudinally over the 5 years of this project. We will invite families to participate indiagnostic evaluations for all children who screen positive and randomly selected children with a negative screen to detect about 842 children with communication delays and about 84 children with ASD. This longitudinal study will address the following specific aims: Aim 1. To study the established cutoff points andestimate sensitivity, specificity, and discrimination for the Smart ESAC at 12 and 18 months in predicting communication delay or red flags for autism at 12 and 18 months, and in predicting distally a best-estimatediagnosis of ASD at 18-24 and 30-36 months; Aim 2. To study individual items and underlying dimensions ofthe constructs measured by the Smart ESAC using factor analysis and item response theory to determine thenumber of factors and differential item function within factors, to ultimately predict diagnostic outcome; and Aim 3. To identify barriers in community settings that impede the screening and referral process and culturallysensitive strategies that function to improve this process. The expected outcomes of the proposed research will have a significant impact on early detection of communication disorders and ASD through documentation ofthe accuracy of a new promising universal automated screening tool for infants and toddlers. This study will also impact family engagement in community screening processes through the development of a manualized engagement intervention based on Motivational Interviewing and family-centered strategies. Findings will also contribute one of the largest and youngest samples of infants and toddlers identified in primary care, with the potential of lowering the age to screen for communication delay and ASD to 12 months, which will have important implications for earlier access to intervention and immediate implementation in community settings.
NDAR
Enrolling
Shared
$1,975,475.00
218
8424
1892
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NIH - Extramural None


R01HD078410-01 Smart Early Screening for Autism and Communication Disorders in Primary Care 01/01/2014 12/31/2018 8424 1892 FLORIDA STATE UNIVERSITY $1,975,475.00

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 Observation Schedule, 2nd Edition (ADOS-2) - Module 1 Clinical Assessments 23
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 2 Clinical Assessments 47
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 3 Clinical Assessments 2
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Toddler Module Clinical Assessments 173
CSBS DP Behavior Sample Clinical Assessments 164
Mullen Scales of Early Learning Clinical Assessments 169
Research Subject Clinical Assessments 177
Vineland-II - Survey Form (2005) Clinical Assessments 158

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
27132013Create StudyPsychometric analysis of the Systematic Observation of Red Flags for autism spectrum disorder in toddlers.Autism : the international journal of research and practiceDow D, Guthrie W, Stronach ST, Wetherby AMApril 2016Not Determined
25832801Create StudyThe Autism Diagnostic Observation Schedule, Toddler Module: Standardized Severity Scores.Journal of autism and developmental disordersEsler AN, Bal VH, Guthrie W, Wetherby A, Ellis Weismer S, Lord CSeptember 2015Not Determined
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Relevant Publications
PubMed IDStudyTitleJournalAuthorsDate
No records found.
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Data Expected
Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Mullen Scales of Early Learning info iconApproved
Family Impact Questionnaire info iconApproved
Research Subject and Pedigree info iconApproved
Family Evaluation Survey info iconApproved
ADOS info iconApproved
Intervention History info iconApproved
Vineland (Parent and Caregiver) info iconApproved
Communication and Symbolic Behavior Scales (CSBS) info iconApproved
Family Resource Scale (FRS) info iconApproved
Parenting Daily Hassles info iconApproved
Systematic Observation of Red Flags for ASD in Young Children (SORF) info iconApproved
Early Screening of Autistic Traits Questionnaire (ESAT) info iconApproved
Parenting Stress Index (PSI) info iconApproved
Parenting Sense of Competence Scale (PSOCS) 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.

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