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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
Adaptive Interventions for Minimally Verbal Children with ASD in the Community
Connie Kasari 
An estimated 30-40% of school-aged children with an autism spectrum disorder (ASD) remain minimally verbal even after receiving years of interventions. These children require an intervention approach that simultaneously (a) consolidates early success in treatment and (b) intensifies treatment given signs of early non-response in order to place all children on a positive, long-term course. The overarching aim of this Network study is to construct an adaptive intervention that utilizes two efficacious interventions (JASP-EMT and CORE-DTT) that rely on distinct intervention procedures and that show promise for optimizing the number of unique socially communicative and spontaneously spoken words in minimally verbal children with ASD. JASP-EMT (Joint Attention, Symbolic Play and Enhanced Milieu Teaching) focuses on creating a context for joint engagement within naturally occurring, child-led play activities. CORE-DTT (discrete trial training for core features of ASD) emphasizes didactic, adult-led instruction. The study utilizes a novel sequential multiple assignment randomized trial to evaluate and construct an optimal adaptive intervention. Children will be initially randomized to six weeks of JASP-EMT or CORE-DTT (first-phase treatment). After six weeks, children will be assessed for early non/response. Early responders will be randomized to staying the course on first-phase treatment with therapist intervention or to therapist plus parent training. Early non-responders to either firstphase treatment will receive both JASP-EMT and CORE-DTT in an attempt to maximize language outcomes. Children will receive intervention daily at school for 4 months total. Outcome assessments will occur at 4 and 8 months. With support from a Data Coordinating Center involving SIStat at UCLA and University of Michigan, the study will enroll 192 children with ASD across four sites, Los Angeles, Nashville, New York and Rochester. The specific aims of the study are a) to determine which intervention (JASP-EMT vs. CORE-DTT) produces greater increases in socially communicative spontaneous utterances (SCU; primary outcome) and symbolinfused joint engagement, number of unique words, and object play level (secondary outcomes), b) to determine whether adding a parent training component provides additional benefit among participants who demonstrate a positive early response to either JASP-EMT or CORE-DTT, c) to compare and contrast four pre-specified adaptive interventions in terms of primary and secondary outcomes, and d) to determine whether baseline repetitive behavior, baseline object interest and parent expectancies for the specific intervention moderate intervention outcomes. This study has the potential to dramatically improve communication outcomes for children with ASD who are minimally verbal, and addresses a high priority need of the Interagency Autism Coordinating Council (2011). A Network of experienced researchers with complementary expertise is necessary to address this unmet priority.
NDAR
Enrolling
Shared
$12,950,672.00
163
384
312

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Chart Expander
NIH - Extramural None


R01HD073975-01 Adaptive Interventions for Minimally Verbal Children with ASD in the Community 09/04/2012 05/31/2017 384 312 UNIVERSITY OF CALIFORNIA LOS ANGELES $12,950,672.00

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 143
ACE Subject Medical History Clinical Assessments 148
Autism Diagnostic Interview, Revised (ADI-R) Clinical Assessments 89
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 1 Clinical Assessments 149
Demographics form UCLA Clinical Assessments 149
Leiter International Performance Scale-Revised (Leiter-R), Visualization and Reasoning Battery Clinical Assessments 149
Peabody Picture Vocabulary Test, Fourth Edition-Form A Clinical Assessments 149
Research Subject Clinical Assessments 149
Treatment History Form Clinical Assessments 135
Vineland-II - Survey Form (2005) Clinical Assessments 119

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
26954267Create StudyLongitudinal Effects of Adaptive Interventions With a Speech-Generating Device in Minimally Verbal Children With ASD.Journal of clinical child and adolescent psychology : the official journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53Almirall D, Distefano C, Chang YC, Shire S, Kaiser A, Lu X, Nahum-Shani I, Landa R, Mathy P, Kasari CMarch 8, 2016Not Determined
26882332Create StudyTreatment Sequencing for Childhood ADHD: A Multiple-Randomization Study of Adaptive Medication and Behavioral Interventions.Journal of clinical child and adolescent psychology : the official journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53Pelham WE, Fabiano GA, Waxmonsky JG, Greiner AR, Gnagy EM, Pelham WE, Coxe S, Verley J, Bhatia I, Hart K, Karch K, Konijnendijk E, Tresco K, Nahum-Shani I, Murphy SAFebruary 16, 2016Not Determined
26638988Create StudyComparing dynamic treatment regimes using repeated-measures outcomes: modeling considerations in SMART studies.Statistics in medicineLu X, Nahum-Shani I, Kasari C, Lynch KG, Oslin DW, Pelham WE, Fabiano G, Almirall DDecember 6, 2015Not Relevant
25900226Create StudyAutism spectrum disorder and epilepsy: Disorders with a shared biology.Epilepsy & behavior : E&BLee, Bo Hoon; Smith, Tristram; Paciorkowski, Alex RJune 2015Not Relevant
25695136Create StudyUpdate on behavioral interventions for autism and developmental disabilities.Current opinion in neurologyKasari, ConnieApril 2015Not Relevant
25356091Create StudyDynamic treatment regimes: technical challenges and applications.Electronic journal of statisticsLaber EB, Lizotte DJ, Qian M, Pelham WE, Murphy SA2014Not Determined
25243378Create StudyHow interview questions are placed in time influences caregiver description of social communication symptoms on the ADI-R.Journal of child psychology and psychiatry, and allied disciplinesJones RM, Risi S, Wexler D, Anderson D, Corsello C, Pickles A, Lord CMay 2015Not Determined
24902922Create StudyOptimization of behavioral dynamic treatment regimens based on the sequential, multiple assignment, randomized trial (SMART).Clinical trials (London, England)Collins LM, Nahum-Shani I, Almirall DJune 5, 2014Not Determined
24839882Create StudyCommunication interventions for minimally verbal children with autism: a sequential multiple assignment randomized trial.Journal of the American Academy of Child and Adolescent PsychiatryKasari C, Kaiser A, Goods K, Nietfeld J, Mathy P, Landa R, Murphy S, Almirall DJune 2014Not 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
Vineland (Parent and Caregiver) info iconApproved
Medical History info iconApproved
Peabody Picture Vocabulary Test, Fourth Edition info iconApproved
Research Subject and Pedigree info iconApproved
Treatment History Measure info iconApproved
ADI-R info iconApproved
Demographics info iconApproved
Leiter International Performance Scale-Revised (Leiter-R) info iconApproved
ADOS info iconApproved
Socially Communicative Utterances (SCU) info iconApproved
Caregiver Child Interaction (CCX) Scale info iconApproved
Caregiver Expectancies info iconApproved
Clinical Global Impression (CGI) info iconApproved
Preschool Language Scale (PLS) info iconApproved
Novel Word Roots info iconApproved
Structured Play Assessment info iconApproved
Repetitive Behavior Scale - Revised (RBS-R) 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.