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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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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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General

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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
Early identification and service linkage for urban children with autism
Emily Feinberg 
Emerging evidence demonstrates that Autism Spectrum Disorder (ASD) can be reliably diagnosed by age two, and that early identification and intervention can improve outcomes. Low-income and minority children with ASD, however, are diagnosed later and experience greater delays in service provision than their white and more financially advantaged peers. Feasible, culturally appropriate interventions with broad scale-up potential are necessary to reduce this disparity. This R01 application builds upon pilot studies (Augustyn, HRSA R40 MC19928; Feinberg, AHRQ R03 HS22155) of an adapted version of Patient Navigation as means to reduce disparities in ASD diagnosis and service provision. Patient Navigation is a lay-delivered case management approach that focuses on overcoming logistical hurdles to care during a defined episode. Pilot data from our research group demonstrate the feasibility of an adapted approach of Patient Navigation, referred to as Family Navigation (FN), among families of children with suspected ASD, and provide suggestive evidence that the approach both reduces time to ASD diagnosis and increases engagement with services. We propose a multisite, randomized comparative effectiveness trial (n=19,500) of a systemic, lay-delivered FN protocol, which begins prior to a child's 18 or 24 month health supervision visit and ends 100 days after an ASD diagnosis is made. The trial takes place in urban, integrated care networks that provide healthcare to low-income children. The basic structure of both intervention arms is a collaborative care system. The conventional care management arm (CCM) is consistent with the type of care provided within a traditional - but high quality - medical home. The FN arm provides more intensive, individually tailored, care coordination and theory-based family support. Children will be followed for 12 months. Data regarding screening outcomes, diagnosis and service utilization will be abstracted from children's medical records. Measures of parental stress, self-management skills, caregiver burden, and satisfaction with services will be administered over 4 collection time points, linked to key intervention outcomes. We will assess the superiority of FN as compared to CCM as a means to: achieve an 80% screening rate for indicators of ASD across all sites; implement a decision rule for referral to ASD evaluation; shorten the time to diagnosis among children suspected to have ASD; shorten the time to deployment of ASD services among those diagnosed; and improve engagement with ASD services. Our lay-delivered FN system has been designed to have broad scale-up potential. Thus, to provide critical information on how such a system could be best implemented and disseminated across urban primary care settings nationwide, we will conduct a concurrent implementation analysis - systematically examining performance gaps in FN's delivery according to the Theoretical Domains Framework. If successful, our study will provide real world primary care practices with a replicable model of care that increases early identification and access to timely diagnostic and early intervention services for a vulnerable population of urban families.
NDAR
Enrolling
Shared
$3,193,290.00
145
250
91
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NIH - Extramural None


R01MH104355-01 Early identification and service linkage for urban children with autism 08/25/2014 06/30/2019 250 91 BOSTON UNIVERSITY MEDICAL CAMPUS $3,193,290.00

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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 97
Child Information Sheet Clinical Assessments 97
Family Demographics Clinical Assessments 97
Modified Checklist for Autism in Toddlers, Revised with Follow-Up Clinical Assessments 97
Parent Demographics Interview Clinical Assessments 97
Research Subject Clinical Assessments 97

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
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Relevant Publications
PubMed IDStudyTitleJournalAuthorsDate
No records found.
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Data Expected
Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Medical History info iconApproved
Demographics info iconApproved
M-CHAT info iconApproved
Research Subject and Pedigree info iconApproved
ADOS info iconApproved
Family Impact Questionnaire info iconApproved
Vineland (Parent and Caregiver) info iconApproved
Short Form Health Survey info iconApproved
Perceived Stress Scale info iconApproved
MOS-Social Support info iconApproved
Pearlin Mastery Scale info iconApproved
Autism Parenting Stress Index info iconApproved
COPE info iconApproved
Patient Satisfaction with Interpersonal Relationship with Navigator info iconApproved
Early Intervention Services Interview info iconApproved
Parenting Stress Index (PSI) info iconApproved
Satisfaction with Hospital Care Questionnaire info iconApproved
Mullen Scales of Early Learning info iconApproved
Adaptive Behavior Assessment System, 2nd edition (ABAS-II) 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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