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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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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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General

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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
Addressing systemic health disparities in early ASD identification and treatment
Alice S. Carter 
The goal of the proposed work is to implement a system-level intervention to (a) improve early detection of autism spectrum disorders (ASD) and (b) increase early access to autism specific early intervention services, especially for children who often are not given the known benefits of early intervention services. The proposed study builds on a funded multi-stage screening study that is currently being implemented in 3 Early Intervention programs serving children in the Circle of Promise, a Boston region with high social/economic risk and comprised of a high % of children from racial/ethnic minority populations, English language learners, or living in poverty. ASD Rates are increasing in the U.S., with recent estimates indicating that 1 in 88 children have ASD. Early diagnosis and intervention are crucial to ensuring optimal long-term outcomes, yet significant disparities exist in rates and age of diagnosis. Children in the above groups are less likely to be diagnosed and are diagnosed 1-2 years later than White, non-poor, English speaking children. This delay limits access to autism-specific early treatments.Timely identification and treatment requires at least two steps: 1) knowing and identifying the early signs of ASD, and 2) acting early. Pediatricians, parents, and EI providers must decide whether a child is showing enough signs to justify further assessment or treatment, or whether the child is at low enough risk to forego immediate action. Thus, acting early requires the about groups to evaluate the early signs and choose a yes/no course of action, which we refer to as a clinical threshold. We believe that early identification and access to care can be improved both by increasing knowledge of the early signs of ASD and by influencing these decision thresholds regarding when to screen, assess, and refer to ASD-specific interventions. Moreover, access to services requires agreement and cooperation among these decision-makers. Guided by our prior theoretical work and engagement with pediatricians and EI providers, we will influence improved access and receipt of needed services for children with ASD by offering: (1) multistage ASD screening to all EI-enrolled children ages 14-24 months, (2) motivational interviewing to parents whose children qualify for ASD services, and (3) systematic outreach to pediatricians from EI sites. This system-level approach involves altering the context in which pediatricians, EI providers, and parents assess and act on signs of ASD to reduce disparities in access to ASD diagnosis and services.This study will test the following hypotheses: 1) Exposed children with ASD will be more likely to be identified, referred, and receive ASD services, regardless of race/ethnicity, language or poverty status; 2) Exposed pediatricians and EI providers will identify more children with ASDs and refer to assessment and services at higher rates; and 3) Exposed parents of children with ASD will report greater agreement with and will be more likely to follow through on ASD-specific assessment and service referrals.
NDAR
Enrolling
Shared
$2,361,920.00
39
372
533
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NIH - Extramural None


R01MH104400-01 Addressing systemic health disparities in early ASD identification and treatment 08/25/2014 06/30/2019 372 533 UNIVERSITY OF MASSACHUSETTS BOSTON $2,361,920.00

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.

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
27884203Create StudyA system dynamics model of clinical decision thresholds for the detection of developmental-behavioral disorders.Implementation science : ISSheldrick RC, Breuer DJ, Hassan R, Chan K, Polk DE, Benneyan JNovember 2016Not Relevant
27556740Create StudySYMPTOM PRESENTATIONS AND CLASSIFICATION OF AUTISM SPECTRUM DISORDER IN EARLY CHILDHOOD: APPLICATION TO THE DIAGNOSTIC CLASSIFICATION OF MENTAL HEALTH AND DEVELOPMENTAL DISORDERS OF INFANCY AND EARLY CHILDHOOD (DC:0-5).Infant mental health journalSoto T, Giserman Kiss I, Carter ASSeptember 2016Not Relevant
26096036Create StudyThresholds and accuracy in screening tools for early detection of psychopathology.Journal of child psychology and psychiatry, and allied disciplinesSheldrick RC, Benneyan JC, Kiss IG, Briggs-Gowan MJ, Copeland W, Carter ASSeptember 2015Not Determined
21935727Create StudyAnxiety and sensory over-responsivity in toddlers with autism spectrum disorders: bidirectional effects across time.Journal of autism and developmental disordersGreen SA, Ben-Sasson A, Soto TW, Carter ASJune 2012Relevant
21598046Create StudyPredictors and course of daily living skills development in toddlers with autism spectrum disorders.Journal of autism and developmental disordersGreen SA, Carter ASFebruary 2014Relevant
help.tab.dataexpected

Relevant Publications
PubMed IDStudyTitleJournalAuthorsDate
21935727Create StudyAnxiety and sensory over-responsivity in toddlers with autism spectrum disorders: bidirectional effects across time.Journal of autism and developmental disordersGreen SA, Ben-Sasson A, Soto TW, Carter ASJune 2012
21598046Create StudyPredictors and course of daily living skills development in toddlers with autism spectrum disorders.Journal of autism and developmental disordersGreen SA, Carter ASFebruary 2014
help.tab.dataexpected.addnew
Data Expected
Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Research Subject and Pedigree info iconApproved
Vineland (Parent and Caregiver) info iconApproved
ADOS info iconApproved
Medical History info iconApproved
Mullen Scales of Early Learning 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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