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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
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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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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.

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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
Emergence and Stability of Autism in Fragile X Syndrome
Jane Roberts 
FXS Demographics, General Demographics, and Mullen Scores
NDAR
Enrollment Completed
Shared
$1,945,055.00
149
312
112
Loading Chart...
NIH - Extramural None

LABTab USC Manual.docx Methods LABTab USC Manual Qualified Researchers

R01MH090194-01 Emergence and Stability of Autism in Fragile X Syndrome 05/27/2011 02/29/2016 312 112 UNIVERSITY OF SOUTH CAROLINA AT COLUMBIA $1,945,055.00

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
595Infant Attention and Face Processing01/13/2017ApprovedEEG

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.

Anthropometric Information Clinical Assessments 112
Autism Diagnostic Interview, Revised (ADI-R) Clinical Assessments 37
Autism Diagnostic Observation Schedule (ADOS) Toddler Clinical Assessments 43
Autism Diagnostic Observation Schedule (ADOS)- Module 1 Clinical Assessments 6
Autism Diagnostic Observation Schedule (ADOS)- Module 2 Clinical Assessments 2
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 1 Clinical Assessments 8
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 2 Clinical Assessments 1
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Toddler Module Clinical Assessments 93
CSBS DP Caregiver Questionnaire Clinical Assessments 64
Demographics Clinical Assessments 126
Early Childhood Behavior Questionnaire Clinical Assessments 86
FXS Demographics Clinical Assessments 47
Infant Behavior Questionnaire Revised Clinical Assessments 105
Mullen Scales of Early Learning Clinical Assessments 136

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
28469730Create StudyReduced vagal tone in women with the FMR1 premutation is associated with FMR1 mRNA but not depression or anxiety.Journal of neurodevelopmental disordersKlusek J, Lafauci G, Adayev T, Brown WT, Tassone F, Roberts JEJanuary 2017Relevant
28372982Create StudyNeural correlates of face processing in etiologically-distinct 12-month-old infants at high-risk of autism spectrum disorder.Developmental cognitive neuroscienceGuy MW, Richards JE, Tonnsen BL, Roberts JEMarch 2017Relevant
28281129Create StudyAutism Spectrum Disorder Symptoms in Infants with Fragile X Syndrome: A Prospective Case Series.Journal of autism and developmental disordersHogan AL, Caravella KE, Ezell J, Rague L, Hills K, Roberts JEMarch 2017Not Determined
28247019Create StudyA Retrospective Video Analysis of Canonical Babbling and Volubility in Infants with Fragile X Syndrome at 9-12 Months of Age.Journal of autism and developmental disordersBelardi K, Watson LR, Faldowski RA, Hazlett H, Crais E, Baranek GT, Mccomish C, Patten E, Oller DKMarch 2017Relevant
27628938Create StudyBrief Report: Autism Symptoms in Infants with Fragile X Syndrome.Journal of autism and developmental disordersRoberts JE, Tonnsen BL, Mccary LM, Caravella KE, Shinkareva SVSeptember 2016Relevant
26914466Create StudyPhysiological Correlates of Maternal Responsivity in Mothers of Preschoolers With Fragile X Syndrome.American journal on intellectual and developmental disabilitiesRobinson AN, Roberts JE, Brady NC, McQuillin SD, Warren SFMarch 2016Relevant
26895548Create StudyPragmatic Language Features of Mothers With the FMR1 Premutation Are Associated With the Language Outcomes of Adolescents and Young Adults With Fragile X Syndrome.Journal of speech, language, and hearing research : JSLHRKlusek J, Mcgrath SE, Abbeduto L, Roberts JEFebruary 2016Relevant
26864160Create StudyInfant Development in Fragile X Syndrome: Cross-Syndrome Comparisons.Journal of autism and developmental disordersRoberts JE, McCary LM, Shinkareva SV, Bailey DBFebruary 10, 2016Relevant
26760450Create StudyHPA axis function predicts development of working memory in boys with FXS.Brain and cognitionScherr JF, Hahn LJ, Hooper SR, Hatton D, Roberts JEFebruary 2016Relevant
26610738Create StudyThe emergence and stability of attention deficit hyperactivity disorder in boys with fragile X syndrome.Journal of intellectual disability research : JIDRGrefer M, Flory K, Cornish K, Hatton D, Roberts JFebruary 2016Relevant
26500715Create StudyTeaching reading to youth with fragile X syndrome: Should phonemic awareness and phonics instruction be used?EBP briefsRandel A, Adlof S, Klusek J, Roberts JMarch 2015Not Relevant
26300270Create StudyTrajectory and Predictors of Depression and Anxiety Disorders in Mothers with the FMR1 Premutation.Biological psychiatryRoberts JE, Tonnsen BL, McCary LM, Ford AL, Golden RN, Bailey DBJuly 31, 2015Relevant
25715182Create StudyLanguage development in infants and toddlers with fragile X syndrome: change over time and the role of attention.American journal on intellectual and developmental disabilitiesKover ST, McCary LM, Ingram AM, Hatton DD, Roberts JEMarch 2015Relevant
25462466Create StudyDevelopmental trajectories of attentional control in preschool males with fragile X syndrome.Research in developmental disabilitiesTonnsen BL, Grefer ML, Hatton DD, Roberts JEOctober 14, 2014Relevant
25448919Create StudyReading and phonological skills in boys with fragile X syndrome.Journal of autism and developmental disordersKlusek J, Hunt AW, Mirrett PL, Hatton DD, Hooper SR, Roberts JE, Bailey DBJune 2015Relevant
25420222Create StudyCardiac autonomic regulation in autism and Fragile X syndrome: a review.Psychological bulletinKlusek, Jessica; Roberts, Jane E; Losh, MollyJanuary 2015Not Relevant
25191537Create StudyThe Development of Adaptive Behavior in Toddlers and Preschoolers with Fragile X versus Autism.International journal of developmental disabilitiesMcCary LM, Machlin L, Roberts JEJuly 1, 2013Relevant
24889646Create StudyPhonological awareness and reading in boys with fragile X syndrome.Journal of child psychology and psychiatry, and allied disciplinesAdlof SM, Klusek J, Shinkareva SV, Robinson ML, Roberts JEJanuary 2015Relevant
24832235Create StudyMaternal predictors of anxiety risk in young males with fragile X.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric GeneticsTonnsen BL, Cornish KM, Wheeler AC, Roberts JEJuly 2014Relevant
24432858Create StudyBiobehavioral indicators of social fear in young children with fragile X syndrome.American journal on intellectual and developmental disabilitiesTonnsen BL, Shinkareva SV, Deal SC, Hatton DD, Roberts JENovember 2013Relevant
24432854Create StudyBiomarkers, behavior, and intellectual and developmental disabilities.American journal on intellectual and developmental disabilitiesSymons FJ, Roberts JENovember 2013Not Relevant
24380785Create StudyTemperament factor structure in fragile X syndrome: the children's behavior questionnaire.Research in developmental disabilitiesRoberts JE, Tonnsen BL, Robinson M, McQuillin SD, Hatton DDFebruary 2014Relevant
23143607Create StudyCardiovascular and behavioral response to auditory stimuli in boys with fragile X syndrome.Journal of pediatric psychologyRoberts JE, Long AC, McCary LM, Quady AN, Rose BS, Widrick D, Baranek GApril 2013Relevant
23011214Create StudyEarly negative affect predicts anxiety, not autism, in preschool boys with fragile X syndrome.Journal of abnormal child psychologyTonnsen BL, Malone PS, Hatton DD, Roberts JEFebruary 2013Relevant
22974167Create StudyEarly identification of autism in fragile X syndrome: a review.Journal of intellectual disability research : JIDRMcCary LM, Roberts JESeptember 2013Not Relevant
22515825Create StudyHeart activity and autistic behavior in infants and toddlers with fragile X syndrome.American journal on intellectual and developmental disabilitiesRoberts JE, Tonnsen B, Robinson A, Shinkareva SVMarch 2012Relevant
22071788Create StudyBehavioral and physiological responses to child-directed speech of children with autism spectrum disorders or typical development.Journal of autism and developmental disordersWatson LR, Roberts JE, Baranek GT, Mandulak KC, Dalton JCAugust 2012Relevant
21720726Create StudyVisual attention and autistic behavior in infants with fragile X syndrome.Journal of autism and developmental disordersRoberts JE, Hatton DD, Long AC, Anello V, Colombo JJune 2012Relevant
help.tab.dataexpected

Relevant Publications
PubMed IDStudyTitleJournalAuthorsDate
28469730Create StudyReduced vagal tone in women with the FMR1 premutation is associated with FMR1 mRNA but not depression or anxiety.Journal of neurodevelopmental disordersKlusek J, Lafauci G, Adayev T, Brown WT, Tassone F, Roberts JEJanuary 2017
28372982Create StudyNeural correlates of face processing in etiologically-distinct 12-month-old infants at high-risk of autism spectrum disorder.Developmental cognitive neuroscienceGuy MW, Richards JE, Tonnsen BL, Roberts JEMarch 2017
28247019Create StudyA Retrospective Video Analysis of Canonical Babbling and Volubility in Infants with Fragile X Syndrome at 9-12 Months of Age.Journal of autism and developmental disordersBelardi K, Watson LR, Faldowski RA, Hazlett H, Crais E, Baranek GT, Mccomish C, Patten E, Oller DKMarch 2017
27628938Create StudyBrief Report: Autism Symptoms in Infants with Fragile X Syndrome.Journal of autism and developmental disordersRoberts JE, Tonnsen BL, Mccary LM, Caravella KE, Shinkareva SVSeptember 2016
26914466Create StudyPhysiological Correlates of Maternal Responsivity in Mothers of Preschoolers With Fragile X Syndrome.American journal on intellectual and developmental disabilitiesRobinson AN, Roberts JE, Brady NC, McQuillin SD, Warren SFMarch 2016
26895548Create StudyPragmatic Language Features of Mothers With the FMR1 Premutation Are Associated With the Language Outcomes of Adolescents and Young Adults With Fragile X Syndrome.Journal of speech, language, and hearing research : JSLHRKlusek J, Mcgrath SE, Abbeduto L, Roberts JEFebruary 2016
26864160Create StudyInfant Development in Fragile X Syndrome: Cross-Syndrome Comparisons.Journal of autism and developmental disordersRoberts JE, McCary LM, Shinkareva SV, Bailey DBFebruary 10, 2016
26760450Create StudyHPA axis function predicts development of working memory in boys with FXS.Brain and cognitionScherr JF, Hahn LJ, Hooper SR, Hatton D, Roberts JEFebruary 2016
26610738Create StudyThe emergence and stability of attention deficit hyperactivity disorder in boys with fragile X syndrome.Journal of intellectual disability research : JIDRGrefer M, Flory K, Cornish K, Hatton D, Roberts JFebruary 2016
26300270Create StudyTrajectory and Predictors of Depression and Anxiety Disorders in Mothers with the FMR1 Premutation.Biological psychiatryRoberts JE, Tonnsen BL, McCary LM, Ford AL, Golden RN, Bailey DBJuly 31, 2015
25715182Create StudyLanguage development in infants and toddlers with fragile X syndrome: change over time and the role of attention.American journal on intellectual and developmental disabilitiesKover ST, McCary LM, Ingram AM, Hatton DD, Roberts JEMarch 2015
25462466Create StudyDevelopmental trajectories of attentional control in preschool males with fragile X syndrome.Research in developmental disabilitiesTonnsen BL, Grefer ML, Hatton DD, Roberts JEOctober 14, 2014
25448919Create StudyReading and phonological skills in boys with fragile X syndrome.Journal of autism and developmental disordersKlusek J, Hunt AW, Mirrett PL, Hatton DD, Hooper SR, Roberts JE, Bailey DBJune 2015
25191537Create StudyThe Development of Adaptive Behavior in Toddlers and Preschoolers with Fragile X versus Autism.International journal of developmental disabilitiesMcCary LM, Machlin L, Roberts JEJuly 1, 2013
24889646Create StudyPhonological awareness and reading in boys with fragile X syndrome.Journal of child psychology and psychiatry, and allied disciplinesAdlof SM, Klusek J, Shinkareva SV, Robinson ML, Roberts JEJanuary 2015
24832235Create StudyMaternal predictors of anxiety risk in young males with fragile X.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric GeneticsTonnsen BL, Cornish KM, Wheeler AC, Roberts JEJuly 2014
24432858Create StudyBiobehavioral indicators of social fear in young children with fragile X syndrome.American journal on intellectual and developmental disabilitiesTonnsen BL, Shinkareva SV, Deal SC, Hatton DD, Roberts JENovember 2013
24380785Create StudyTemperament factor structure in fragile X syndrome: the children's behavior questionnaire.Research in developmental disabilitiesRoberts JE, Tonnsen BL, Robinson M, McQuillin SD, Hatton DDFebruary 2014
23143607Create StudyCardiovascular and behavioral response to auditory stimuli in boys with fragile X syndrome.Journal of pediatric psychologyRoberts JE, Long AC, McCary LM, Quady AN, Rose BS, Widrick D, Baranek GApril 2013
23011214Create StudyEarly negative affect predicts anxiety, not autism, in preschool boys with fragile X syndrome.Journal of abnormal child psychologyTonnsen BL, Malone PS, Hatton DD, Roberts JEFebruary 2013
22515825Create StudyHeart activity and autistic behavior in infants and toddlers with fragile X syndrome.American journal on intellectual and developmental disabilitiesRoberts JE, Tonnsen B, Robinson A, Shinkareva SVMarch 2012
22071788Create StudyBehavioral and physiological responses to child-directed speech of children with autism spectrum disorders or typical development.Journal of autism and developmental disordersWatson LR, Roberts JE, Baranek GT, Mandulak KC, Dalton JCAugust 2012
21720726Create StudyVisual attention and autistic behavior in infants with fragile X syndrome.Journal of autism and developmental disordersRoberts JE, Hatton DD, Long AC, Anello V, Colombo JJune 2012
help.tab.dataexpected.addnew
Data Expected
Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Demographics info iconApproved
ADOS info iconApproved
ADI-R info iconApproved
Early Childhood Behavioral Questionnaire (ECBQ) info iconApproved
Communication and Symbolic Behavior Scales (CSBS) info iconApproved
Infant Behavior Questionnaire (IBQ) info iconApproved
Mullen Scales of Early Learning info iconApproved
Physical Exam info iconApproved
EEG info iconApproved
Heart Rate-defined Phases of Attention info iconApproved
Autism Observation Scale for Infants (AOSI) info iconApproved
Research Subject and Pedigree info iconApproved
Genetic Test info iconApproved
Laboratory Temperament Assessment Battery 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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