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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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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.

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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
Detection of ASD at the 1st birthday as standard of care: The Get SET Early Model
Karen L. Pierce 
We previously demonstrated that our early intervention model system, which was centered on using the CSBS to screen all babies at the 1-year check-up as standard of care, resulted in a mean age of 12 months for screening, 14 months for evaluation, and 18 months for treatment participation. These are far younger ages than is common in the U.S. Our 3-stage model system, Get SET (S=Screen; E=Evaluate; T=Treat) Early, screened >10,000 1 year olds in our first trial run detecting over 100 ASD and other developmental delayed toddlers. We will build on this highly effective model by implementing a new version in two major cities: San Diego and Phoenix; Los Angeles, Irvine, and Phoenix will provide baseline control data. In Phoenix, we test the feasibility of establishing the Get SET Early model in a city with one of the lowest median incomes and oldest age of first diagnosis in America. In AIM #1, the Screen and Refer Early stage, we will create a Pediatrician Network with 100 members. In San Diego we will utilize our existing Pediatrician Network and test new innovations such as a repeat triple screen at 12, 18, and 24 months to ensure that no toddlers are missed. Speed of referral for evaluation will be compared and contrasted using parent (self) and automatic (referral iPad App) options. We will track every toddler with an eventual ASD diagnosis within circumscribed medical groups to determine the true sensitivity and specificity of the screening tool and the percentage of ASD toddlers detected by our model. Anonymous survey data regarding screening habits will be administered to parents and pediatricians. AIM #2 implements the Evaluate and Refer Early stage. Its key attribute is an ASD Early Evaluation Clinic that specializes in the rapid scheduling and evaluation of every referred screened positive toddler. Toddlers will enter the program at the age they fail the screen (i.e., 12, 18 or 24 months) and will be thoroughly diagnostically evaluated and tracked once per year until they turn 3 years. This specialty Clinic is at our Autism Center in San Diego and will be developed at SARRC in Phoenix. Automated versus optional self-referral for treatment will be tested and compared. AIM #3 implements the Treat Early stage. Its key attributes are a network of providers of empirically based treatment and the innovative use of an inexpensive and readily available web-based treatment tracking system to document engagement. Treatment Networks will be created in San Diego and Phoenix. Primary outcome measures include rates and ages of screening and referral, evaluation and referral, and treatment engagement; sustainability across years; diagnostic, clinical and demographic characteristics of subjects; professional and parent satisfaction at each stage. We hypothesize that providing screening tools with clear cut-off scores and guidelines for automatic referral for evaluation and treatment, will result in dramatically lowering mean age of diagnosis and treatment in Phoenix from 4-5 years down to 1-2 years; San Diego will likewise have mean ages of 1-2 years for diagnosis and treatment making them significantly earlier than Los Angeles and Irvine control sites.
NDAR
Enrolling
Shared
$4,241,757.00
1,038
12000
61907
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NIH - Extramural None


R01MH104446-01 Detection of ASD at the 1st birthday as standard of care: The Get SET Early Model 08/25/2014 06/30/2019 12000 61907 UNIVERSITY OF CALIFORNIA SAN DIEGO $4,241,757.00

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) - Toddler Module Clinical Assessments 368
CSBS DP Infant-Toddler Checklist Clinical Assessments 552
Mullen Scales of Early Learning Clinical Assessments 430
Vineland-II - Survey Form (2005) Clinical Assessments 433

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
27421956Create StudyTo Screen or Not to Screen Universally for Autism is not the Question: Why the Task Force Got It Wrong.The Journal of pediatricsPierce K, Courchesne E, Bacon ESeptember 2016Not Determined
26430170Create StudyEarly Intervention for Children With Autism Spectrum Disorder Under 3 Years of Age: Recommendations for Practice and Research.PediatricsZwaigenbaum L, Bauman ML, Choueiri R, Kasari C, Carter A, Granpeesheh D, Mailloux Z, Smith Roley S, Wagner S, Fein D, Pierce K, Buie T, Davis PA, Newschaffer C, Robins D, Wetherby A, Stone WL, Yirmiya N, Estes A, Hansen RL, Mcpartland JC, Natowicz MROctober 2015Not Determined
26430169Create StudyEarly Screening of Autism Spectrum Disorder: Recommendations for Practice and Research.PediatricsZwaigenbaum L, Bauman ML, Fein D, Pierce K, Buie T, Davis PA, Newschaffer C, Robins DL, Wetherby A, Choueiri R, Kasari C, Stone WL, Yirmiya N, Estes A, Hansen RL, Mcpartland JC, Natowicz MR, Carter A, Granpeesheh D, Mailloux Z, Smith Roley S, Wagner SOctober 2015Not Determined
26430168Create StudyEarly Identification of Autism Spectrum Disorder: Recommendations for Practice and Research.PediatricsZwaigenbaum L, Bauman ML, Stone WL, Yirmiya N, Estes A, Hansen RL, Mcpartland JC, Natowicz MR, Choueiri R, Fein D, Kasari C, Pierce K, Buie T, Carter A, Davis PA, Granpeesheh D, Mailloux Z, Newschaffer C, Robins D, Roley SS, Wagner S, Wetherby AOctober 2015Not Determined
26430167Create StudyEarly Identification and Interventions for Autism Spectrum Disorder: Executive Summary.PediatricsZwaigenbaum L, Bauman ML, Choueiri R, Fein D, Kasari C, Pierce K, Stone WL, Yirmiya N, Estes A, Hansen RL, Mcpartland JC, Natowicz MR, Buie T, Carter A, Davis PA, Granpeesheh D, Mailloux Z, Newschaffer C, Robins D, Smith Roley S, Wagner S, Wetherby AOctober 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
ADOS info iconApproved
Vineland (Parent and Caregiver) info iconApproved
Communication and Symbolic Behavior Scales (CSBS) 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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