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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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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.

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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
Measuring QALYs in Children with ASDs
John Tilford; Karen Kuhlthau 
Autism spectrum disorders (ASDs) are characterized by impairments in social skills, communication, and cognitive and behavioral functioning. Successful interventions for children with ASDs thus have the potential to not only affect outcomes of the child, but may include substantial health benefits for the family. Guidelines for evaluating the cost-effectiveness of services recommend using the cost per quality adjusted life year (QALY) gained. To date, no studies have attempted to evaluate whether instruments to measure QALYS in children with ASDs are sensitive to the condition. In addition, research is needed to account for family effects in cost-effectiveness analysis. Despite the potential for informing resource allocation to treatment of children with ASDs, methods and data for measuring QALYS in this population are lacking.
NDAR
Closed
Shared
$975,561.00
217
240
55
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NIH - Extramural None


R01MH089466-01 Measuring quality adjusted life years in children with autism spectrum disorders 09/30/2009 08/31/2012 240 55 UNIV OF ARKANSAS FOR MED SCIS $975,561.00

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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.

Autism Diagnostic Observation Schedule (ADOS) - Module 4 Clinical Assessments 6
Autism Diagnostic Observation Schedule (ADOS)- Module 1 Clinical Assessments 82
Autism Diagnostic Observation Schedule (ADOS)- Module 2 Clinical Assessments 45
Autism Diagnostic Observation Schedule (ADOS)- Module 3 Clinical Assessments 73
CPEA STAART Bayley Scales for Infant Development Clinical Assessments 3
CPEA STAART Stanford Binet 5th Edition Clinical Assessments 80
CareQoL Clinical Assessments 213
Center for Epidemiologic Studies Depression Scale (CES-D) Clinical Assessments 213
Child Demographics Clinical Assessments 216
Child's Sleep Habits Questionnaire (CSHQ) Clinical Assessments 190
Demographics Clinical Assessments 179
EuroQol EQ-5D Clinical Assessments 213
Family Demographics Clinical Assessments 213
Family Quality of Life Assessment Clinical Assessments 213
Health Utilities Index Mark 3 Clinical Assessments 216
Modified CHARGE Family Medical History (2007) Clinical Assessments 179
Quality of Well-Being Scale Clinical Assessments 216
Short Form-6D Health Survey Clinical Assessments 213
Stanford-Binet Intelligence Scales, Fifth Edition (SB5) Clinical Assessments 165
Vineland-II - Survey Form (2005) Clinical Assessments 192

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
26126749Create StudyTreatment for Sleep Problems in Children with Autism and Caregiver Spillover Effects.Journal of autism and developmental disordersTilford JM, Payakachat N, Kuhlthau KA, Pyne JM, Kovacs E, Bellando J, Williams DK, Brouwer WB, Frye RENovember 2015Not Determined
25581557Create StudyFinancial and employment impact of intellectual disability on families of children with autism.Families, systems & health : the journal of collaborative family healthcareSaunders, Barbara S; Tilford, J Mick; Fussell, Jill J; Schulz, Eldon G; Casey, Patrick H; Kuo, Dennis ZMarch 2015Not Relevant
25255789Create StudyPredicting health utilities for children with autism spectrum disorders.Autism research : official journal of the International Society for Autism ResearchPayakachat N, Tilford JM, Kuhlthau KA, van Exel NJ, Kovacs E, Bellando J, Pyne JM, Brouwer WBDecember 2014Not Determined
24577786Create StudyCaring for a child with autism spectrum disorder and parents' quality of life: application of the CarerQol.Journal of autism and developmental disordersHoefman R, Payakachat N, van Exel J, Kuhlthau K, Kovacs E, Pyne J, Tilford JMAugust 2014Not Determined
22971035Create StudyAutism spectrum disorders: a review of measures for clinical, health services and cost-effectiveness applications.Expert review of pharmacoeconomics & outcomes researchPayakachat N, Tilford JM, Kovacs E, Kuhlthau KAugust 2012Not Determined
22788258Create StudyPreference-based health-related quality-of-life outcomes in children with autism spectrum disorders: a comparison of generic instruments.PharmacoEconomicsTilford JM, Payakachat N, Kovacs E, Pyne JM, Brouwer W, Nick TG, Bellando J, Kuhlthau KAAugust 1, 2012Not Determined
help.tab.dataexpected

Relevant Publications
PubMed IDStudyTitleJournalAuthorsDate
No records found.
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Data Expected
Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Medical History info iconApproved
Vineland (Parent and Caregiver) info iconApproved
ADOS info iconApproved
Bayley Scales of Infant and Toddler Development, Third Edition (BSID) info iconApproved
Stanford Binet info iconApproved
Childs Sleep Habits Questionnaire (CSHQ) info iconApproved
Health Utilities Index Mark 3 (HUI3) info iconApproved
Quality of Life Assessment info iconApproved
Caregiver quality of life assessment info iconApproved
Quality of Well-Being Scale Self-Administered (QWB-SA) info iconApproved
EuroQol, EQ-5D info iconApproved
Demographics info iconApproved
Research Subject and Pedigree info iconApproved
SF 6D Health Survey info iconApproved
Center for Epidemiologic Studies Depression Scale (CES-D) 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
The Sensitivity and Specificity of the Social Communication Questionnaire for Autism Spectrum Disorder with Respect to Age Scientific Abstract The Social Communication Questionnaire (SCQ) assesses communication skills and social functioning in screening for symptoms of autism-spectrum disorder (ASD). The SCQ is recommended for individuals between 4 to 40 years with a cutoff score of 15 for referral. Mixed findings have been reported regarding the recommended cutoff score’s ability to accurately classify an individual as at-risk for ASD (sensitivity) versus an individual as not at-risk for ASD (specificity). Based on a sample from the National Database for Autism Research (n=344; age: 1.58 to 25.92 years old), the present study examined the SCQ’s sensitivity versus specificity across a range of ages. We recommend that the cutoff scores for the SCQ be re-evaluated with age as a consideration. Lay Abstract The age neutrality of the Social Communication Questionnaire (SCQ) was examined as a common screener for ASD. Mixed findings have been reported regarding the recommended cutoff score’s ability to accurately classify an individual as at-risk for ASD (sensitivity) versus accurately classifying an individual as not at-risk for ASD (specificity). With a sample from the National Database for Autism Research, the present study examined the SCQ’s sensitivity versus specificity. Analyses indicated that the actual sensitivity and specificity scores were lower than initially reported by the creators of the SCQ. 1 / 339 Secondary Analysis Shared
Predicting Health Utilities for Children With Autism Spectrum Disorders Comparative effectiveness of interventions for children with autism spectrum disorders (ASDs) that incorporates costs is lacking due to the scarcity of information on health utility scores or preference-weighted outcomes typically used for calculating quality-adjusted life years (QALYs). This study created algorithms for mapping clinical and behavioral measures for children with ASDs to health utility scores. The algorithms could be useful for estimating the value of different interventions and treatments used in the care of children with ASDs. Participants were recruited from two Autism Treatment Network sites. Health utility data based on the Health Utilities Index Mark 3 (HUI3) for the child were obtained from the primary caregiver (proxy-reported) through a survey (N = 224). During the initial clinic visit, proxy-reported measures of the Child Behavior Checklist, Vineland II Adaptive Behavior Scales, and the Pediatric Quality of Life Inventory 4.0 (start measures) were obtained and then merged with the survey data. Nine mapping algorithms were developed using the HUI3 scores as dependent variables in ordinary least squares regressions along with the start measures, the Autism Diagnostic Observation Schedule, to measure severity, child age, and cognitive ability as independent predictors. In-sample cross-validation was conducted to evaluate predictive accuracy. Multiple imputation techniques were used for missing data. The average age for children with ASDs in this study was 8.4 (standard deviation = 3.5) years. Almost half of the children (47%) had cognitive impairment (IQ < 70). Total scores for all of the outcome measures were significantly associated with the HUI3 score. The algorithms can be applied to clinical studies containing start measures of children with ASDs to predict QALYs gained from interventions. 216 / 216 Primary Analysis Shared
* Data not on individual level
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