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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
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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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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.
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Data Expected Item Original Sharing Date New Sharing Date

Please provide a reason for this change, which will be sent to the Program Officers listed within this collection:

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
Initial Investigation of Prevention of ASD in Infants at Risk
Sally J. Rogers  
The project's overall goal is to develop and pilot test a manualized, parent-delivered intervention for symptomatic infants ages 6-11 months of age at high risk for autism that will reduce atypical behaviors and developmental delays and increase developmental rates, thus lessening or preventing the full expression of autism. The intervention will target five behaviors occurring in infants who show abnormal behaviors in the first year of life and later develop autism, as documented by prospective and retrospective evidence. These include: (1) visual fixations on objects; (2) abnormal repetitive behaviors; (3) lack of intentional communicative acts; (4) lack of ageappropriate, phonemic development; and (5) lack of coordination of gaze, affect, and voice in reciprocal, turn-taking interactions.
NDAR
Closed
Shared
$527,101.00
4
8
2
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NIH - Extramural None


R21HD065275-01 Initial Investigation of Prevention of ASD in Infants at Risk 09/30/2009 08/31/2011 8 2 UNIVERSITY OF CALIFORNIA AT DAVIS $527,101.00

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 (ADOS)- Module 1 Clinical Assessments 3
Mullen Scales of Early Learning Clinical Assessments 4
Vineland-II - Parent and Caregiver Rating Form (2005) Clinical Assessments 4

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
25212413Create StudyAutism treatment in the first year of life: a pilot study of infant start, a parent-implemented intervention for symptomatic infants.Journal of autism and developmental disordersRogers SJ, Vismara L, Wagner AL, McCormick C, Young G, Ozonoff SDecember 2014Not 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
Working Alliance Scale info iconApproved
Vineland (Parent and Caregiver) info iconApproved
Autism Observation Scale for Infants (AOSI) info iconApproved
Parent Satisfaction Rating info iconApproved
Research Subject and Pedigree info iconApproved
Carolina Curriculum Infants Toddlers Special Needs (CCITSN) 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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