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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
New Project

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

Please select an experiment type below

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.
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
Intervention effects of intensity and delivery style for toddlers with ASD
Sally Rogers 
High quality, intensive early intervention is a powerful treatment for ASD, improving IQ and language markedly in randomized controlled clinical trials (RCTs), though little long term follow-up data exists. Few core characteristics that affect child change have been tested. Two potential core characteristics that invoke considerable debate among parents, professionals, and administrators are the delivery style of intervention: play-based versus discrete trial teaching, and the intensity (dosage) of intervention. This ACE treatment network will conduct two RCTs to answer two main questions: study 1: what are the effects of intensity and delivery style on developmental progress of toddlers with ASD, and study 2: do toddlers from a previous RCT of a specific intervention approach, the Early Start Denver Model (ESDM), versus community treatment maintain and generalize treatment effects over 3 years? For study 1, a sample of 108 young children with ASD, ages 15-30 months, will be enrolled in one of three national sites (Univ Cal Davis, Vanderbilt, Univ. Washington) and randomized into one of four cells varying on two dimensions: dosage - 15 or 25 hours per week of 1:1 treatment; and direct or play- based teaching. All other aspects of intervention will be hel constant: use of the principles of applied behavior analysis, content of the teaching, location, staff, parent curriculum, and materials. Developmental progress will be measured monthly allowing for growth curve analysis to examine fine-grained differences in groups as well as interactions among major child and family initial variables and these two experimental variables. For study 2, 79 participants from a previous ACE Network project enrolled between 15 and 24 months of age will be followed up at 6-7 years of age. All children were randomized into two years of intensive intervention of either ESDM or community intervention and assessed with a comprehensive diagnostic and behavioral assessment battery at four time points during the original study. Stability of treatment effects and group differences will be examined. Specific aims are: 1. to examine the effect of intensity of treatment, or "dosage", on child progress/ outcomes; 2. to examine the effect of intervention delivery style: play-based or DTT, on child progress/ outcomes; 3. to examine effects of quality and quantity of parent-provided learning opportunities at home on child progress/ outcomes; 4. to test the moderating effects of initial pre-linguistic vocal patterns, autism severity, and developmental rates on child outcomes; 5. to examine maintenance of ESDM treatment child and family effects three years post intervention; 6. to support the scientific development of young investigators with specific interest and expertise in autism science.
NDAR
Enrolling
Shared
$10,961,732.00
119
124
150

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No Data Shared

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NIH - Extramural None


R01MH100030-01 Intervention effects of intensity and delivery style for toddlers with ASD 03/25/2013 02/28/2018 124 150 UNIVERSITY OF CALIFORNIA AT DAVIS $10,961,732.00

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.

ACE Family Medical History Clinical Assessments 71
ACE Subject Medical History Clinical Assessments 71
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 1 Clinical Assessments 10
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 2 Clinical Assessments 4
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 3 Clinical Assessments 15
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Toddler Module Clinical Assessments 55
DAS-II: Differential Ability Scales 2nd Ed. School Age Clinical Assessments 15
DAS-II:Differential Ability Scales 2nd Ed. Early Years Clinical Assessments 14
DSM-IV Checklist (Early Steps; SOFAS) Clinical Assessments 55
Life Events Survey Clinical Assessments 97
M-CHAT Clinical Assessments 67
Mullen Scales of Early Learning Clinical Assessments 76
PDD Behavior Inventory (Parent) Clinical Assessments 51
Parent Sense of Competence Clinical Assessments 84
Vineland-II - Survey Form (2005) Clinical Assessments 101

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
24104517Create StudyPilot clinical application of an adaptive robotic system for young children with autism.Autism : the international journal of research and practiceBekele E, Crittendon JA, Swanson A, Sarkar N, Warren ZEJuly 2014Not Determined
24014194Create StudyCan Robotic Interaction Improve Joint Attention Skills?Journal of autism and developmental disordersWarren ZE, Zheng Z, Swanson AR, Bekele E, Zhang L, Crittendon JA, Weitlauf AF, Sarkar NNovember 2015Not Determined
23847130Create StudyThe diagnosis of autism in community pediatric settings: does advanced training facilitate practice change?Autism : the international journal of research and practiceSwanson AR, Warren ZE, Stone WL, Vehorn AC, Dohrmann E, Humberd QJuly 2014Not Determined
23838727Create StudyThe impact of parent-delivered intervention on parents of very young children with autism.Journal of autism and developmental disordersEstes A, Vismara L, Mercado C, Fitzpatrick A, Elder L, Greenson J, Lord C, Munson J, Winter J, Young G, Dawson G, Rogers SFebruary 2014Not Determined
23812664Create StudyBrief report: DSM-5 "levels of support:" a comment on discrepant conceptualizations of severity in ASD.Journal of autism and developmental disordersWeitlauf AS, Gotham KO, Vehorn AC, Warren ZEFebruary 2014Not Determined
23748386Create StudyThe Autism Impact Measure (AIM): initial development of a new tool for treatment outcome measurement.Journal of autism and developmental disordersKanne SM, Mazurek MO, Sikora D, Bellando J, Branum-Martin L, Handen B, Katz T, Freedman B, Powell MP, Warren ZJanuary 2014Not Determined
23436778Create StudyStability and validity of an automated measure of vocal development from day-long samples in children with and without autism spectrum disorder.Autism research : official journal of the International Society for Autism ResearchYoder PJ, Oller DK, Richards JA, Gray S, Gilkerson JApril 2013Not Determined
23275404Create StudyIs more better? Milieu communication teaching in toddlers with intellectual disabilities.Journal of speech, language, and hearing research : JSLHRFey ME, Yoder PJ, Warren SF, Bredin-Oja SLApril 2013Not Determined
23045221Create StudyBrief report: Service implementation and maternal distress surrounding evaluation recommendations for young children diagnosed with autism.Autism : the international journal of research and practiceWarren Z, Vehorn A, Dohrmann E, Newsom C, Taylor JLNovember 2013Not Determined

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
M-CHAT info iconApproved
Vineland (Parent and Caregiver) info iconApproved
ADI-R info iconApproved
Child Behavior Checklist (CBCL) info iconApproved
Medical History info iconApproved
ADOS info iconApproved
DAS-II: Differential Ability Scales info iconApproved
Intervention History info iconApproved
Language Use Inventory (LUI) info iconApproved
LENA - Frequency of Speech info iconApproved
Life Events Questionnaire (LEQ) info iconApproved
MacArthur Bates Communicative Development Inventory info iconApproved
Mullen Scales of Early Learning info iconApproved
Parenting Sense of Competence Scale (PSOCS) info iconApproved
PDD Behavior Inventory (PDDBI) info iconApproved
Questionnaire on Resources and Stress (QRS-F) info iconApproved
Research Subject and Pedigree info iconApproved
DSM IV Criteria info iconApproved
Physical Exam 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.