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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
New Trial
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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
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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
Efficacy of Relationship Development Intervention and Parent-Implemented Applied Behavior
Mary Louise Kerwin Ph.D.  
Relationship Development Intervention (RDI) is a relationship-based intervention focusing on recreating developmental milestones through meaningful interactions with parents. The primary goal of RDI is to increase the childs response to parents bid for JA and the childs initiation of JA with the parent. By increasing JA skills, spoken language should emerge. In contrast, Applied Behavior Analysis of Verbal Behavior (ABA/VB) increases spoken language directly using a scientific approach that has decades of empirical evidence. Despite its effectiveness, ABA/VB is usually implemented by therapist and teachers, and not by parents. By embedding ABA/VB in meaningful social relationships with parents, JA skills may emerge as a corollary of improved language. ABA/VB and RDI have different primary targets for intervention; however, both approaches assume that JA and language, respectively, will emerge as a corollary effect of the intervention. No research has yet to investigate this assumption. The long-term goal of the proposed program of research is to evaluate parent-implemented treatments for ASD. The specific objective of this proposal is to compare two parent adjunctive interventions, RDI and ABA/VB, with each other and against treatment as usual (TAU) on JA and language in preschool children with ASD. The aims of this pilot study are: (1) to validate and refine treatment manuals for RDI and ABA/VB and training manuals for ABA/VB; train an ABA therapist to conduct ABA/VB; and pilot test RDI and ABA/VB interventions with parents of children with ASD 2-6 years of age, (2) evaluate the efficacy of 12-weeks of parent implemented RDI and ABA/VB as adjunctive treatments to TAU by conducting a small randomized pilot study comparing RDI, ABA/VB, and TAU on JA and language at baseline, end of treatment, and 3 month follow-up via direct observation and standardized measures. The primary hypothesis is that children of parents receiving RDI or ABA/VB will demonstrate more joint attention (JA) and more language during parent-child interactions compared to children of parents receiving TAU only. A secondary hypothesis is that children in the ABA/VB group will demonstrate better expressive language skills than children in the RDI group, and children in the RDI group will demonstrate better JA than children in the ABA/VB group at the end of treatment. There will be no difference between ABA/VB and RDI groups in JA and language at the 3-month follow-up. By the end of this project, all the necessary components of a treatment outcome pilot study for parenting interventions for children with ASD will be completed. The resulting data will serve as preliminary data to allow the calculation of effect size to adequately power a larger trial. If the project is successful, the resulting improvements could have important health benefits for children with ASD.
NDAR
Enrollment Completed
Shared
$0.00
57
0
0

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Chart Expander
NJ Governor’s Council for Medical Research None



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.

ACE Family Medical History Clinical Assessments 31
ACE Subject Medical History Clinical Assessments 32
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 1 Clinical Assessments 21
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 2 Clinical Assessments 7
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 3 Clinical Assessments 1
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Toddler Module Clinical Assessments 7
CHARGE Medical History Clinical Assessments 6
CSBS DP Behavior Sample Clinical Assessments 35
Demographics Short Form Clinical Assessments 52
Direct Observations Clinical Assessments 46
Mullen Scales of Early Learning Clinical Assessments 45
Preschool Language Scales Fifth edition (PLS-5) 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
No records found.

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
Communication and Symbolic Behavior Scales (CSBS) info iconApproved
Preschool Language Scale (PLS) info iconApproved
Research Subject and Pedigree info iconApproved
ADOS info iconApproved
Medical History info iconApproved
Direct Observations - Coded info iconApproved
Mullen Scales of Early Learning info iconApproved
Demographics 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.