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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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Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
Family Outcomes in Autism Spectrum Disorders
Sigan L. Hartley 
It is now estimated that 1 in 88 children in the U.S. are diagnosed with an autism spectrum disorder (ASD).Few disabilities are more stressful on parents than ASD. There is theoretical and empirical evidence to suggestthat chronic parenting stress affects marital adjustment. The overarching goal of this project is to examine thewithin-family associations between the autism symptoms and behavior problems of children with ASDs andmarital adjustment as these processes unfold in naturalistic contexts and across 3 years. The specific studyaims are: 1) Compare the self-reported and observed marital adjustment of couples of children with ASDs ascompared to couples who have children without disabilities. 2) Test the within-family day-to-day temporaleffects of child symptoms and behavior problems on couple interactions. 3) Examine the trajectories of globalself-reported and observed marital adjustment across 4 waves of data collection spanning 3 years.In total, 175 married couples who have a child with an ASD aged 5 to 12 years will participate in the study.Study variables will be assessed through self-reported and teacher-reported measures and direct observationsacross 4 waves of data collection spanning 3 years. A matched comparison group of 150 married couples ofchildren without a disability will also participate at Time 1 to understand how the processes in families ofchildren with ASDs differ from normative experiences. Associations between marital adjustment and childsymptoms and behavior problems will be examined using both a micro-level scale (14-day daily diary at Time1), to examine the unfolding of 'real time' day-to-day associations in their natural and spontaneous context, anda macro-level scale (4 waves of data collection spanning 3 years), to examine the longer-term time-orderpathways between these variables. Our primary unit of analysis is the couple, with individuals (husbands andwives) nested within couples. Multivariate multilevel modeling will be used to handle the inter-dependence ofspouses data collected at multiple time points (Raudenbush & Bryk, 2002).
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NIH - Extramural None

R01MH099190-01 Family Outcomes in Autism Spectrum Disorders 06/01/2013 02/28/2018 680 678 UNIVERSITY OF WISCONSIN-MADISON $2,084,506.00

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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.

Adaptive Behavior Assessment System, Second Edition Clinical Assessments 165
Demographics Short Form Clinical Assessments 1014
Family Outcomes in Autism Spectrum Disorder Clinical Assessments 1011
Research Subject Clinical Assessments 1017

Collection Owners and those with Collection Administrator permission, may edit a collection. The following is currently available for Edit on this page:


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
27336179Create StudyThe Effect of Daily Challenges in Children With Autism on Parents' Couple Problem-Solving Interactions.Journal of family psychology : JFP : journal of the Division of Family Psychology of the American Psychological Association (Division 43)Hartley SL, Papp LM, Blumenstock SM, Floyd F, Goetz GLJune 23, 2016Not Determined
27218268Create StudySpillover of Marital Interactions and Parenting Stress in Families of Children With Autism Spectrum Disorder.Journal of clinical child and adolescent psychology : the official journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53Hartley SL, Papp LM, Bolt DMay 24, 2016Not Determined
25484479Create StudyDivision of Labor in Families of Children and Adolescents with Autism Spectrum Disorder.Family relationsHartley SL, Mihaila I, Otalora-Fadner HS, Bussanich PMDecember 2014Not Determined
25433405Create StudySupport needs of fathers and mothers of children and adolescents with autism spectrum disorder.Journal of autism and developmental disordersHartley SL, Schultz HMJune 2015Not Determined
24217029Create StudyParental attributions for the behavior problems of children and adolescents with autism spectrum disorders.Journal of developmental and behavioral pediatrics : JDBPHartley SL, Schaidle EM, Burnson CF2013 Nov-DecNot Determined

Relevant Publications
PubMed IDStudyTitleJournalAuthorsDate
No records found.
Data Expected
Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Medical History info iconApproved
Adaptive Behavior Assessment System, 2nd edition (ABAS-II) info iconApproved
Demographics info iconApproved
Research Subject and Pedigree info iconApproved
Personal Assessment of Intimacy in Relationships (PAIR) info iconApproved
Daily Couple Adaptive Processes Instrument info iconApproved
Couple Satisfaction Index (CSI) info iconApproved
Couples Conflict and Problem-Solving Strategies (CCPS) info iconApproved
Dyadic Coping Inventory (DCI) info iconApproved
Broad Autism Phenotype Questionnaire (BAPQ) info iconApproved
Social Communication Questionnaire (SCQ) info iconApproved
Social Responsiveness Scale (SRS) info iconApproved
Scales of Independent Behavior Revised (SIB-R) info iconApproved
Child Behavior Checklist (CBCL) 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.

Study Name Description Number of Subjects
Collection / Total
Data Use State
Rare Inherited and De Novo CNVs Reveal Complex Contributions to ASD Risk in Multiplex families NOTE: NOT ALL DATA HAS BEEN UPLOADED FOR THIS STUDY. Rare mutations, including copy-number variants (CNVs), contribute significantly to autism spectrum disorder (ASD) risk. Although their importance has been established in families with only one affected child (simplex families), the contribution of both de novo and inherited CNVs to ASD in families with multiple affected individuals (multiplex families) is less well understood. We analyzed 1,532 families from the Autism Genetic Resource Exchange (AGRE) to assess the impact of de novo and rare CNVs on ASD risk in multiplex families. We observed a higher burden of large, rare CNVs, including inherited events, in individuals with ASD than in their unaffected siblings (odds ratio [OR] = 1.7), but the rate of de novo events was significantly lower than in simplex families. In previously characterized ASD risk loci, we identified 49 CNVs, comprising 24 inherited events, 19 de novo events, and 6 events of unknown inheritance, a significant enrichment in affected versus control individuals (OR = 3.3). In 21 of the 30 families (71%) in whom at least one affected sibling harbored an established ASD major risk CNV, including five families harboring inherited CNVs, the CNV was not shared by all affected siblings, indicating that other risk factors are contributing. We also identified a rare risk locus for ASD and language delay at chromosomal region 2q24 (implicating NR4A2) and another lower-penetrance locus involving inherited deletions and duplications of WWOX. The genetic architecture in multiplex families differs from that in simplex families and is complex, warranting more complete genetic characterization of larger multiplex ASD cohorts. 1 / 5288 Primary Analysis Shared
* Data not on individual level