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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

Collection - Use Existing Experiment
To associate an experiment to the current collection, just select an axperiment from the table below then click the associate experiment button to persist your changes (saving the collection is not required). Note that once an experiment has been associated to two or more collections, the experiment will not longer be editable.

The table search feature is case insensitive and targets the experiment id, experiment name and experiment type columns. The experiment id is searched only when the search term entered is a number, and filtered using a startsWith comparison. When the search term is not numeric the experiment name is used to filter the results.
SelectExperiment IdExperiment NameExperiment Type
Created On
475MB1-10 (CHOP)Omics06/07/2016
490Illumina Infinium PsychArray BeadChip AssayOmics07/07/2016
501PharmacoBOLD Resting StatefMRI07/27/2016
509ABC-CT Resting v2EEG08/18/2016
13Comparison of FI expression in Autistic and Neurotypical Homo SapiensOmics12/28/2010
18AGRE/Broad Affymetrix 5.0 Genotype ExperimentOmics01/06/2011
22Stitching PCR SequencingOmics02/14/2011
29Microarray family 03 (father, mother, sibling)Omics03/24/2011
37Standard paired-end sequencing of BCRsOmics04/19/2011
38Illumina Mate-Pair BCR sequencingOmics04/19/2011
39Custom Jumping LibrariesOmics04/19/2011
40Custom CapBPOmics04/19/2011
43Autism brain sample genotyping, IlluminaOmics05/16/2011
47ARRA Autism Sequencing Collaboration at Baylor. SOLiD 4 SystemOmics08/01/2011
53AGRE Omni1-quadOmics10/11/2011
59AGP genotypingOmics04/03/2012
60Ultradeep 454 sequencing of synaptic genes from postmortem cerebella of individuals with ASD and neurotypical controlsOmics06/23/2012
63Microemulsion PCR and Targeted Resequencing for Variant Detection in ASDOmics07/20/2012
76Whole Genome Sequencing in Autism FamiliesOmics01/03/2013
90Genotyped IAN SamplesOmics07/09/2013
91NJLAGS Axiom Genotyping ArrayOmics07/16/2013
93AGP genotyping (CNV)Omics09/06/2013
106Longitudinal Sleep Study. H20 200. Channel set 2EEG11/07/2013
107Longitudinal Sleep Study. H20 200. Channel set 3EEG11/07/2013
108Longitudinal Sleep Study. AURA 200EEG11/07/2013
105Longitudinal Sleep Study. H20 200. Channel set 1EEG11/07/2013
109Longitudinal Sleep Study. AURA 400EEG11/07/2013
116Gene Expression Analysis WG-6Omics01/07/2014
131Jeste Lab UCLA ACEii: Charlie Brown and Sesame Street - Project 1Eye Tracking02/27/2014
132Jeste Lab UCLA ACEii: Animacy - Project 1Eye Tracking02/27/2014
133Jeste Lab UCLA ACEii: Mom Stranger - Project 2Eye Tracking02/27/2014
134Jeste Lab UCLA ACEii: Face Emotion - Project 3Eye Tracking02/27/2014
151Candidate Gene Identification in familial AutismOmics06/09/2014
152NJLAGS Whole Genome SequencingOmics07/01/2014
154Math Autism Study - Vinod MenonfMRI07/15/2014
160syllable contrastEEG07/29/2014
167School-age naturalistic stimuliEye Tracking09/19/2014
44AGRE/Broad Affymetrix 5.0 Genotype ExperimentOmics06/27/2011
45Exome Sequencing of 20 Sporadic Cases of Autism Spectrum DisorderOmics07/15/2011
Collection - Add Experiment
Add Supporting Documentation
Select File

To add an existing Data Structure, enter its title in the search bar. If you need to request changes, select the indicator "No, it requires changes to meet research needs" after selecting the Structure, and upload the file with the request changes specific to the selected Data Structure. Your file should follow the Request Changes Procedure. If the Data Structure does not exist, select "Request New Data Structure" and upload the appropriate zip file.

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Please confirm that you will not be enrolling any more subjects and that all raw data has been collected and submitted.

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Your Collection is now in Data Analysis phase and exempt from biannual submissions. Analyzed data is still expected prior to publication or no later than the project end date.

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Unable to change collection phase where targeted enrollment is less than 90%

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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
NIMH Data Archive
Funding Completed
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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 156 112 UNIVERSITY OF SOUTH CAROLINA AT COLUMBIA $803,314.00


NDA Help Center

Collection - General Tab

Fields available for edit on the top portion of the page include:

  • Collection Title
  • Investigators
  • Collection Description
  • Collection Phase
  • Funding Source
  • Clinical Trials

Collection Phase: The current status of a research project submitting data to an NDA Collection, based on the timing of the award and/or the data that have been submitted.

  • Pre-Enrollment: The default entry made when the NDA Collection is created.
  • Enrolling: Data have been submitted to the NDA Collection or the NDA Data Expected initial submission date has been reached for at least one data structure category in the NDA Collection.
  • Data Analysis: Subject level data collection for the research project is completed and has been submitted to the NDA Collection. The NDA Collection owner or the NDA Help Desk may set this phase when they’ve confirmed data submission is complete and submitted subject counts match at least 90% of the target enrollment numbers in the NDA Data Expected. Data submission reminders will be turned off for the NDA Collection.
  • Funding Completed: The NIH grant award (or awards) associated with the NDA Collection has reached its end date. NDA Collections in Funding Completed phase are assigned a subphase to indicate the status of data submission.
    • The Data Expected Subphase indicates that NDA expects more data will be submitted
    • The Closeout Subphase indicates the data submission is complete.
    • The Sharing Not Met Subphase indicates that data submission was not completed as expected.

Blinded Clinical Trial Status:

  • This status is set by a Collection Owner and indicates the research project is a double blinded clinical trial. When selected, the public view of Data Expected will show the Data Expected items and the Submission Dates, but the targeted enrollment and subjects submitted counts will not be displayed.
  • Targeted enrollment and subjects submitted counts are visible only to NDA Administrators and to the NDA Collection or as the NDA Collection Owner.
  • When an NDA Collection that is flagged Blinded Clinical Trial reaches the maximum data sharing date for that Data Repository (see https://nda.nih.gov/nda/sharing-regimen.html), the embargo on Data Expected information is released.

Funding Source

The organization(s) responsible for providing the funding is listed here.

Supporting Documentation

Users with Submission privileges, as well as Collection Owners, Program Officers, and those with Administrator privileges, may upload and attach supporting documentation. By default, supporting documentation is shared to the general public, however, the option is also available to limit this information to qualified researchers only.

Grant Information

Identifiable details are displayed about the Project of which the Collection was derived from. You may click in the Project Number to view a full report of the Project captured by the NIH.

Clinical Trials

Any data that is collected to support or further the research of clinical studies will be available here. Collection Owners and those with Administrator privileges may add new clinical trials.

Frequently Asked Questions

  • How does the NIMH Data Archive (NDA) determine which Permission Group data are submitted into?
    During Collection creation, NDA staff determine the appropriate Permission Group based on the type of data to be submitted, the type of access that will be available to data access users, and the information provided by the Program Officer during grant award.
  • How do I know when a NDA Collection has been created?
    When a Collection is created by NDA staff, an email notification will automatically be sent to the PI(s) of the grant(s) associated with the Collection to notify them.
  • Is a single grant number ever associated with more than one Collection?
    The NDA system does not allow for a single grant to be associated with more than one Collection; therefore, a single grant will not be listed in the Grant Information section of a Collection for more than one Collection.
  • Why is there sometimes more than one grant included in a Collection?
    In general, each Collection is associated with only one grant; however, multiple grants may be associated if the grant has multiple competing segments for the same grant number or if multiple different grants are all working on the same project and it makes sense to hold the data in one Collection (e.g., Cooperative Agreements).


  • Administrator Privilege
    A privilege provided to a user associated with an NDA Collection or NDA Study whereby that user can perform a full range of actions including providing privileges to other users.
  • Collection Owner
    Generally, the Collection Owner is the contact PI listed on a grant. Only one NDA user is listed as the Collection owner. Most automated emails are primarily sent to the Collection Owner.
  • Collection Phase
    The Collection Phase provides information on data submission as opposed to grant/project completion so while the Collection phase and grant/project phase may be closely related they are often different. Collection users with Administrative Privileges are encouraged to edit the Collection Phase. The Program Officer as listed in eRA (for NIH funded grants) may also edit this field. Changes must be saved by clicking the Save button at the bottom of the page. This field is sortable alphabetically in ascending or descending order. Collection Phase options include:
    • Pre-Enrollment: A grant/project has started, but has not yet enrolled subjects.
    • Enrolling: A grant/project has begun enrolling subjects. Data submission is likely ongoing at this point.
    • Data Analysis: A grant/project has completed enrolling subjects and has completed all data submissions.
    • Funding Completed: A grant/project has reached the project end date.
  • Collection Title
    An editable field with the title of the Collection, which is often the title of the grant associated with the Collection.
  • Grant
    Provides the grant number(s) for the grant(s) associated with the Collection. The field is a hyperlink so clicking on the Grant number will direct the user to the grant information in the NIH Research Portfolio Online Reporting Tools (RePORT) page.
  • Supporting Documentation
    Various documents and materials to enable efficient use of the data by investigators unfamiliar with the project and may include the research protocol, questionnaires, and study manuals.
  • NIH Research Initiative
    NDA Collections may be organized by scientific similarity into NIH Research Initiatives, to facilitate query tool user experience. NIH Research Initiatives map to one or multiple Funding Opportunity Announcements.
  • Permission Group
    Access to shared record-level data in NDA is provisioned at the level of a Permission Group. NDA Permission Groups consist of one or multiple NDA Collections that contain data with the same subject consents.
  • Planned Enrollment
    Number of human subject participants to be enrolled in an NIH-funded clinical research study. The data is provided in competing applications and annual progress reports.
  • Actual Enrollment
    Number of human subjects enrolled in an NIH-funded clinical research study. The data is provided in annual progress reports.
  • NDA Collection
    A virtual container and organization structure for data and associated documentation from one grant or one large project/consortium. It contains tools for tracking data submission and allows investigators to define a wide array of other elements that provide context for the data, including all general information regarding the data and source project, experimental parameters used to collect any event-based data contained in the Collection, methods, and other supporting documentation. They also allow investigators to link underlying data to an NDA Study, defining populations and subpopulations specific to research aims.
  • Data Use Limitations
    Data Use Limitations (DULs) describe the appropriate secondary use of a dataset and are based on the original informed consent of a research participant. NDA only accepts consent-based data use limitations defined by the NIH Office of Science Policy.
  • Total Subjects Shared
    The total number of unique subjects for whom data have been shared and are available for users with permission to access data.
IDNameCreated DateStatusType
595Infant Attention and Face Processing01/13/2017ApprovedEEG

NDA Help Center

Collection - Experiments

The number of Experiments included is displayed in parentheses next to the tab name. You may download all experiments associated with the Collection via the Download button. You may view individual experiments by clicking the Experiment Name and add them to the Filter Cart via the Add to Cart button.

Collection Owners, Program Officers, and users with Submission or Administrative Privileges for the Collection may create or edit an Experiment.

Please note: The creation of an NDA Experiment does not necessarily mean that data collected, according to the defined Experiment, has been submitted or shared.

Frequently Asked Questions

  • Can an Experiment be associated with more than one Collection?

    Yes -see the “Copy” button in the bottom left when viewing an experiment. There are two actions that can be performed via this button:

    1. Copy the experiment with intent for modifications.
    2. Associate the experiment to the collection. No modifications can be made to the experiment.


  • Experiment Status
    An Experiment must be Approved before data using the associated Experiment_ID may be uploaded.
  • Experiment ID
    The ID number automatically generated by NDA which must be included in the appropriate file when uploading data to link the Experiment Definition to the subject record.
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 6
Demographics Clinical Assessments 5
FXS Demographics Clinical Assessments 1
Genomics Genetic Test Genomics 24
Mullen Scales of Early Learning Clinical Assessments 9

NDA Help Center

Collection - Shared Data

This tab provides a quick overview of the Data Structure title, Data Type, and Number of Subjects that are currently Shared for the Collection. The information presented in this tab is automatically generated by NDA and cannot be edited. If no information is visible on this tab, this would indicate the Collection does not have shared data or the data is private.

The shared data is available to other researchers who have permission to access data in the Collection's designated Permission Group(s). Use the Download button to get all shared data from the Collection to the Filter Cart.

Frequently Asked Questions

  • How will I know if another researcher uses data that I shared through the NIMH Data Archive (NDA)?
    To see what data your project have submitted are being used by a study, simply go the Associated Studies tab of your collection. Alternatively, you may review an NDA Study Attribution Report available on the General tab.
  • Can I get a supplement to share data from a completed research project?
    Often it becomes more difficult to organize and format data electronically after the project has been completed and the information needed to create a GUID may not be available; however, you may still contact a program staff member at the appropriate funding institution for more information.
  • Can I get a supplement to share data from a research project that is still ongoing?
    Unlike completed projects where researchers may not have the information needed to create a GUID and/or where the effort needed to organize and format data becomes prohibitive, ongoing projects have more of an opportunity to overcome these challenges. Please contact a program staff member at the appropriate funding institution for more information.


  • Data Structure
    A defined organization and group of Data Elements to represent an electronic definition of a measure, assessment, questionnaire, or collection of data points. Data structures that have been defined in the NDA Data Dictionary are available at https://nda.nih.gov/general-query.html?q=query=data-structure
  • Data Type
    A grouping of data by similar characteristics such as Clinical Assessments, Omics, or Neurosignal data.
  • Shared
    The term 'Shared' generally means available to others; however, there are some slightly different meanings based on what is Shared. A Shared NDA Study is viewable and searchable publicly regardless of the user's role or whether the user has an NDA account. A Shared NDA Study does not necessarily mean that data used in the NDA Study have been shared as this is independently determined. Data are shared according the schedule defined in a Collection's Data Expected Tab and/or in accordance with data sharing expectations in the NDA Data Sharing Terms and Conditions. Additionally, Supporting Documentation uploaded to a Collection may be shared independent of whether data are shared.

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 NDA 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
38246961Create StudySimilar Gap-Overlap Profiles in Children with Fragile X Syndrome and IQ-Matched Autism.Journal of autism and developmental disordersWall, Carla A; Shic, Frederick; Will, Elizabeth A; Wang, Quan; Roberts, Jane EJanuary 21, 2024Not Determined
37961141Create StudyThe Effect of Anxiety and Autism Symptom Severity on Restricted and Repetitive Behaviors Over Time in Children with Fragile X Syndrome.Research squareMoskowitz, Lauren; Will, Elizabeth; Black, Conner; Roberts, JaneNovember 2, 2023Not Determined
37020738Create StudyNegative affect and respiratory sinus arrhythmia are differentially related to social anxiety and autism features in autistic preschoolers contrasted to fragile X syndrome.Frontiers in psychiatryWall, Carla A; Roberts, Jane EJanuary 1, 2023Not Determined
36408848Create StudyDistinct social attention profiles in preschoolers with autism contrasted to fragile X syndrome.Autism research : official journal of the International Society for Autism ResearchWall, Carla A; Shic, Frederick; Varanasi, Sreeja; Roberts, Jane EFebruary 1, 2023Not Determined
36138866Create StudyCortical Source Analysis of the Face Sensitive N290 ERP Component in Infants at High Risk for Autism.Brain sciencesGuy, Maggie W; Richards, John E; Roberts, Jane EAugust 25, 2022Not Determined
36082630Create StudyADHD and ASD symptoms in young males with fragile X syndrome: associations with early trajectories of inhibitory control.Child neuropsychology : a journal on normal and abnormal development in childhood and adolescenceHunt, Erin; Hogan, Abigail; Will, Elizabeth A; Roberts, Jane EJuly 1, 2023Not Determined
35046845Create StudyCardiac Startle Response and Clinical Outcomes in Preschool Children With Fragile X Syndrome and Autism Spectrum Disorder.Frontiers in psychiatryEzell, Jordan; Hogan, Abigail; Will, Elizabeth A; Smith, Kayla; Roberts, JaneJanuary 1, 2021Not Determined
34899412Create StudyNeural Correlates of Infant Face Processing and Later Emerging Autism Symptoms in Fragile X Syndrome.Frontiers in psychiatryGuy, Maggie W; Richards, John E; Hogan, Abigail L; Roberts, Jane EJanuary 1, 2021Not Determined
34700347Create StudyMotor Influences on Communication: Comparisons Between Down Syndrome and Fragile X Syndrome.American journal on intellectual and developmental disabilitiesWill, Elizabeth A; Roberts, Jane ENovember 1, 2021Not Determined
34690833Create StudyTrajectories of Heart Activity Across Infancy to Early Childhood Differentially Predict Autism and Anxiety Symptoms in Fragile X Syndrome.Frontiers in psychiatryHogan, Abigail; Hunt, Erin; Smith, Kayla; Black, Conner; Bangert, Katherine; Klusek, Jessica; Roberts, JaneJanuary 1, 2021Not Determined
34674252Create StudyPeak selection and latency jitter correction in developmental event-related potentials.Developmental psychobiologyGuy, Maggie W; Conte, Stefania; Bursalıoğlu, Aslı; Richards, John ENovember 1, 2021Not Determined
34674246Create StudyA single-session behavioral protocol for successful event-related potential recording in children with neurodevelopmental disorders.Developmental psychobiologyGuy, Maggie W; Black, Conner J; Hogan, Abigail L; Coyle, Ramsey E; Richards, John E; Roberts, Jane ENovember 1, 2021Not Determined
33911031Create StudyEmergence of Developmental Delay in Infants and Toddlers With an FMR1 Mutation.PediatricsWheeler, Anne C; Gwaltney, Angela; Raspa, Melissa; Okoniewski, Katherine C; Berry-Kravis, Elizabeth; Botteron, Kelly N; Budimirovic, Dejan; Hazlett, Heather Cody; Hessl, David; Losh, Molly; Martin, Gary E; Rivera, Susan M; Roberts, Jane E; Bailey Jr, Donald BMay 1, 2021Not Determined
33743580Create StudyEarly behavioral and physiological markers of social anxiety in infants with fragile X syndrome.Journal of neurodevelopmental disordersBlack, Conner J; Hogan, Abigail L; Smith, Kayla D; Roberts, Jane EMarch 20, 2021Not Determined
33651888Create StudyAttention Bias and Prodromal Anxiety Symptoms in Toddlers With Fragile X Syndrome and Down Syndrome.American journal on intellectual and developmental disabilitiesSmith, Kayla; Hogan, Abigail L; Will, Elizabeth; Roberts, Jane EMarch 1, 2021Not Determined
33161907Create StudyEmergence and rate of autism in fragile X syndrome across the first years of life.Development and psychopathologyRoberts, Jane E; Bradshaw, Jessica; Will, Elizabeth; Hogan, Abigail L; McQuillin, Samuel; Hills, KimberlyOctober 1, 2020Not Determined
32661519Create StudyAutism Spectrum Disorder-Associated Behaviour in Infants with Down Syndrome.Journal of health science & educationHahn, Laura J; Hamrick, Lisa M; Kelleher, Bridgette L; Roberts, Jane EJanuary 2020Not Determined
32221748Create StudyRestricted and Repetitive Behaviors in Males and Females with Fragile X Syndrome: Developmental Trajectories in Toddlers Through Young Adults.Journal of autism and developmental disordersMoskowitz, Lauren J; Will, Elizabeth A; Black, Conner J; Roberts, Jane ENovember 2020Not Determined
32044434Create StudyFace-sensitive brain responses in the first year of life.NeuroImageConte, Stefania; Richards, John E; Guy, Maggie W; Xie, Wanze; Roberts, Jane EMay 2020Not Determined
32020687Create StudyAnxiety and threat-related attentional biases in adolescents with fragile X syndrome.Journal of intellectual disability research : JIDRKelleher, B L; Hogan, A L; Ezell, J; Caravella, K; Schmidt, J; Wang, Q; Roberts, J EApril 2020Not Determined
31586494Create StudyDevelopmental divergence: motor trajectories in children with fragile X syndrome with and without co-occurring autism.Journal of neurodevelopmental disordersWill, Elizabeth A; Bishop, Somer L; Roberts, Jane EOctober 2019Not Determined
31519170Create StudyEarly negative affect in males and females with fragile X syndrome: implications for anxiety and autism.Journal of neurodevelopmental disordersWall CA, Hogan AL, Will EA, Mcquillin S, Kelleher BL, Roberts JESeptember 2019Not Determined
31407873Create StudyAcoustic properties of early vocalizations in infants with fragile X syndrome.Autism research : official journal of the International Society for Autism ResearchHamrick, Lisa R; Seidl, Amanda; Tonnsen, Bridgette LNovember 2019Not Determined
31251678Create StudyGesture Frequency and Function in Infants With Fragile X Syndrome and Infant Siblings of Children With Autism Spectrum Disorder.Journal of speech, language, and hearing research : JSLHRHughes KR, Hogan AL, Roberts JE, Klusek JJuly 2019Not Determined
31165359Create StudySocial Avoidance Emerges in Infancy and Persists into Adulthood in Fragile X Syndrome.Journal of autism and developmental disordersRoberts J, Crawford H, Hogan AL, Fairchild A, Tonnsen B, Brewe A, O'Connor S, Roberts DA, Abbeduto LSeptember 2019Not Determined
31133885Create StudyInfant Social Avoidance Predicts Autism but Not Anxiety in Fragile X Syndrome.Frontiers in psychiatryRoberts, Jane E; Crawford, Hayley; Will, Elizabeth A; Hogan, Abigail L; McQuillin, Samuel; Tonnsen, Bridgette L; O'Connor, Shannon; Roberts, Douglas A; Brewe, Alexis MJanuary 2019Not Determined
30396281Create StudyInfant Temperament in the FMR1 Premutation and Fragile X Syndrome.Journal of clinical child and adolescent psychology : the official journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53Tonnsen, Bridgette L; Wheeler, Anne C; Hamrick, Lisa R; Roberts, Jane EMay 2019Not Determined
30382442Create StudyASD Comorbidity in Fragile X Syndrome: Symptom Profile and Predictors of Symptom Severity in Adolescent and Young Adult Males.Journal of autism and developmental disordersAbbeduto L, Thurman AJ, Mcduffie A, Klusek J, Feigles RT, Ted Brown W, Harvey DJ, Adayev T, Lafauci G, Dobkins C, Roberts JEMarch 2019Not Determined
30197656Create StudyCurvilinear Association Between Language Disfluency and FMR1 CGG Repeat Size Across the Normal, Intermediate, and Premutation Range.Frontiers in geneticsKlusek, Jessica; Porter, Anna; Abbeduto, Leonard; Adayev, Tatyana; Tassone, Flora; Mailick, Marsha R; Glicksman, Anne; Tonnsen, Bridgette L; Roberts, Jane EJanuary 1, 2018Not Determined
30155926Create StudyInitiating joint attention use in infants at high-risk for autism spectrum disorder.Journal of intellectual disability research : JIDRBrewe, A M; Reisinger, D L; Adlof, S M; Roberts, J EOctober 2018Not Determined
30097759Create StudyVagal Tone as a Putative Mechanism for Pragmatic Competence: An Investigation of Carriers of the FMR1 Premutation.Journal of autism and developmental disordersKlusek, Jessica; Fairchild, Amanda J; Roberts, Jane EJanuary 2019Not Determined
29781139Create StudyEarly gesture use in fragile X syndrome.Journal of intellectual disability research : JIDRRague L, Caravella K, Tonnsen B, Klusek J, Roberts JJuly 2018Not Determined
29671637Create StudyReading in Children With Fragile X Syndrome: Phonological Awareness and Feasibility of Intervention.American journal on intellectual and developmental disabilitiesAdlof, Suzanne M; Klusek, Jessica; Hoffmann, Anne; Chitwood, Kerrie L; Brazendale, Allison; Riley, Karen; Abbeduto, Leonard J; Roberts, Jane EMay 2018Not Determined
29480774Create StudyThe Emergence of Effortful Control in Young Boys With Fragile X Syndrome.American journal on intellectual and developmental disabilitiesRobinson, Marissa; Klusek, Jessica; Poe, Michele D; Hatton, Deborah D; Roberts, Jane EMarch 2018Not Determined
29439664Create StudyHeart rate-defined sustained attention in infants at risk for autism.Journal of neurodevelopmental disordersTonnsen, Bridgette L; Richards, John E; Roberts, Jane EFebruary 2018Not Determined
29399949Create StudyAdaptive behavior in infants and toddlers with Down syndrome and fragile X syndrome.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric GeneticsWill, Elizabeth A; Caravella, Kelly E; Hahn, Laura J; Fidler, Deborah J; Roberts, Jane EApril 2018Not Determined
29171019Create StudyCortisol profiles differentiated in adolescents and young adult males with fragile X syndrome versus autism spectrum disorder.Developmental psychobiologyMatherly, Sara M; Klusek, Jessica; Thurman, Angela J; McDuffie, Andrea; Abbeduto, Leonard; Roberts, Jane EJanuary 2018Not Determined
29170682Create StudyAdaptive Skill Trajectories in Infants with Fragile X Syndrome Contrasted to Typical Controls and Infants at High Risk for Autism.Research in autism spectrum disordersCaravella, Kelly E; Roberts, Jane EAugust 2017Not Determined
29040924Create StudyEarly social communication in infants with fragile X syndrome and infant siblings of children with autism spectrum disorder.Research in developmental disabilitiesHahn, Laura J; Brady, Nancy C; McCary, Lindsay; Rague, Lisa; Roberts, Jane EDecember 2017Not Determined
28972453Create StudyImpaired eye contact in the FMR1 premutation is not associated with social anxiety or the broad autism phenotype.The Clinical neuropsychologistKlusek, Jessica; Ruber, Alexis; Roberts, Jane EAugust 2018Not Determined
28895261Create StudyThe effects of optimism, religion, and hope on mood and anxiety disorders in women with the FMR1 premutation.Journal of intellectual disability research : JIDRLowell, E P; Tonnsen, B L; Bailey, D B; Roberts, J EOctober 2017Not Determined
28856552Create StudyBehavioral Markers of Emergent Stranger Anxiety in Infants and Toddlers with Fragile X Syndrome.Journal of autism and developmental disordersTonnsen, Bridgette; Scherr, Jessica; Reisinger, Debra; Roberts, JaneNovember 2017Not Determined
28846036Create StudyDifferential Relationships of Anxiety and Autism Symptoms on Social Skills in Young Boys With Fragile X Syndrome.American journal on intellectual and developmental disabilitiesReisinger DL, Roberts JESeptember 2017Not Determined
28835209Create StudyAltered sensitivity to social gaze in the FMR1 premutation and pragmatic language competence.Journal of neurodevelopmental disordersKlusek, Jessica; Schmidt, Joseph; Fairchild, Amanda J; Porter, Anna; Roberts, Jane EAugust 2017Not Relevant
28469730Create StudyReduced vagal tone in women with the FMR1 premutation is associated with FMR1 mRNA but not depression or anxiety.Journal of neurodevelopmental disordersKlusek, Jessica; LaFauci, Giuseppe; Adayev, Tatyana; Brown, W Ted; Tassone, Flora; Roberts, Jane EJanuary 2017Relevant
28372982Create StudyNeural correlates of face processing in etiologically-distinct 12-month-old infants at high-risk of autism spectrum disorder.Developmental cognitive neuroscienceGuy, Maggie W; Richards, John E; Tonnsen, Bridgette L; Roberts, Jane EJanuary 2018Relevant
28281129Create StudyAutism Spectrum Disorder Symptoms in Infants with Fragile X Syndrome: A Prospective Case Series.Journal of autism and developmental disordersHogan, Abigail L; Caravella, Kelly E; Ezell, Jordan; Rague, Lisa; Hills, Kimberly; Roberts, Jane EJune 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, Katie; Watson, Linda R; Faldowski, Richard A; Hazlett, Heather; Crais, Elizabeth; Baranek, Grace T; McComish, Cara; Patten, Elena; Oller, D KimbroughApril 2017Relevant
28210826Create StudyStranger Fear and Early Risk for Social Anxiety in Preschoolers with Fragile X Syndrome Contrasted to Autism Spectrum Disorder.Journal of autism and developmental disordersScherr, Jessica F; Hogan, Abigail L; Hatton, Deborah; Roberts, Jane EDecember 1, 2017Not Determined
27628938Create StudyBrief Report: Autism Symptoms in Infants with Fragile X Syndrome.Journal of autism and developmental disordersRoberts, Jane E; Tonnsen, Bridgette L; McCary, Lindsay M; Caravella, Kelly E; Shinkareva, Svetlana VDecember 2016Relevant
26914466Create StudyPhysiological Correlates of Maternal Responsivity in Mothers of Preschoolers With Fragile X Syndrome.American journal on intellectual and developmental disabilitiesRobinson, Ashley N; Roberts, Jane E; Brady, Nancy C; McQuillin, Samuel D; Warren, Steven FMarch 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, Jane E; McCary, Lindsay M; Shinkareva, Svetlana V; Bailey Jr, Donald BJune 1, 2016Relevant
26760450Create StudyHPA axis function predicts development of working memory in boys with FXS.Brain and cognitionScherr, Jessica F; Hahn, Laura J; Hooper, Stephen R; Hatton, Deborah; Roberts, Jane EFebruary 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, Allison; Adlof, Suzanne; Klusek, Jessica; Roberts, JaneMarch 2015Not Relevant
26300270Create StudyTrajectory and Predictors of Depression and Anxiety Disorders in Mothers With the FMR1 Premutation.Biological psychiatryRoberts, Jane E; Tonnsen, Bridgette L; McCary, Lindsay M; Ford, Amy L; Golden, Robert N; Bailey Jr, Donald BMay 15, 2016Relevant
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, Sara T; McCary, Lindsay M; Ingram, Alexandra M; Hatton, Deborah D; Roberts, Jane EMarch 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, Lindsay M; Machlin, Laura; Roberts, Jane EJuly 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, Bridgette L; Cornish, Kim M; Wheeler, Anne C; Roberts, Jane EJuly 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, Jane E; Tonnsen, Bridgette L; Robinson, Marissa; McQuillin, Samuel D; Hatton, Deborah DFebruary 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, Linda R; Roberts, Jane E; Baranek, Grace T; Mandulak, Kerry C; Dalton, Jennifer CAugust 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

NDA Help Center

Collection - Publications

The number of Publications is displayed in parentheses next to the tab name. Clicking on any of the Publication Titles will open the Publication in a new internet browsing tab.

Collection Owners, Program Officers, and users with Submission or Administrative Privileges for the Collection may mark a publication as either Relevant or Not Relevant in the Status column.

Frequently Asked Questions

  • How can I determine if a publication is relevant?
    Publications are considered relevant to a collection when the data shared is directly related to the project or collection.
  • Where does the NDA get the publications?
    PubMed, an online library containing journals, articles, and medical research. Sponsored by NiH and National Library of Medicine (NLM).


  • Create Study
    A link to the Create an NDA Study page that can be clicked to start creating an NDA Study with information such as the title, journal and authors automatically populated.
  • Not Determined Publication
    Indicates that the publication has not yet been reviewed and/or marked as Relevant or Not Relevant so it has not been determined whether an NDA Study is expected.
  • Not Relevant Publication
    A publication that is not based on data related to the aims of the grant/project associated with the Collection or not based on any data such as a review article and, therefore, an NDA Study is not expected to be created.
  • PubMed
    PubMed provides citation information for biomedical and life sciences publications and is managed by the U.S. National Institutes of Health's National Library of Medicine.
  • PubMed ID
    The PUBMed ID is the unique ID number for the publication as recorded in the PubMed database.
  • Relevant Publication
    A publication that is based on data related to the aims of the grant/project associated with the Collection and, therefore, an NDA Study is expected to be created.
Data Expected List: Mandatory Data Structures

These data structures are mandatory for your NDA Collection. Please update the Targeted Enrollment number to accurately represent the number of subjects you expect to submit for the entire study.

For NIMH HIV-related research that involves human research participants: Select the dictionary or dictionaries most appropriate for your research. If your research does not require all three data dictionaries, just ignore the ones you do not need. There is no need to delete extra data dictionaries from your NDA Collection. You can adjust the Targeted Enrollment column in the Data Expected tab to “0” for those unnecessary data dictionaries. At least one of the three data dictionaries must have a non-zero value.

Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Research Subject and Pedigree info icon
To create your project's Data Expected list, use the "+New Data Expected" to add or request existing structures and to request new Data Structures that are not in the NDA Data Dictionary.

If the Structure you need already exists, locate it and specify your dates and enrollment when adding it to your Data Expected list. If you require changes to the Structure you need, select the indicator stating "No, it requires changes to meet research needs," and upload a file containing your requested changes.

If the structure you need is not yet defined in the Data Dictionary, you can select "Upload Definition" and attach the necessary materials to request its creation.

When selecting the expected dates for your data, make sure to follow the standard Data Sharing Regimen and choose dates within the date ranges that correspond to your project start and end dates.

Please visit the Completing Your Data Expected Tutorial for more information.
Data Expected List: Data Structures per Research Aims

These data structures are specific to your research aims and should list all data structures in which data will be collected and submitted for this NDA Collection. Please update the Targeted Enrollment number to accurately represent the number of subjects you expect to submit for the entire study.

Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Mullen Scales of Early Learning info icon
ADOS info icon
ADI-R info icon
Genetic Test info icon
Infant Behavior Questionnaire (IBQ) info icon
Demographics info icon
Autism Observation Scale for Infants (AOSI) info icon
Communication and Symbolic Behavior Scales (CSBS) info icon
Physical Exam info icon
Early Childhood Behavioral Questionnaire (ECBQ) info icon
EEG info icon
Laboratory Temperament Assessment Battery info icon
Structure not yet defined
No Status history for this Data Expected has been recorded yet

NDA Help Center

Collection - Data Expected

The Data Expected tab displays the list of all data that NDA expects to receive in association with the Collection as defined by the contributing researcher, as well as the dates for the expected initial upload of the data, and when it is first expected to be shared, or with the research community. Above the primary table of Data Expected, any publications determined to be relevant to the data within the Collection are also displayed - members of the contributing research group can use these to define NDA Studies, connecting those papers to underlying data in NDA.

The tab is used both as a reference for those accessing shared data, providing information on what is expected and when it will be shared, and as the primary tracking mechanism for contributing projects. It is used by both contributing primary researchers, secondary researchers, and NIH Program and Grants Management staff.

Researchers who are starting their project need to update their Data Expected list to include all the Data Structures they are collecting under their grant and set their initial submission and sharing schedule according to the NDA Data Sharing Regimen.

To add existing Data Structures from the Data Dictionary, to request new Data Structure that are not in the Dictionary, or to request changes to existing Data Structures, click "+New Data Expected".

For step-by-step instructions on how to add existing Data Structures, request changes to an existing Structure, or request a new Data Structure, please visit the Completing Your Data Expected Tutorial.

If you are a contributing researcher creating this list for the first time, or making changes to the list as your project progress, please note the following:

  • Although items you add to the list and changes you make are displayed, they are not committed to the system until you Save the entire page using the "Save" button at the bottom of your screen. Please Save after every change to ensure none of your work is lost.
  • If you attempt to add a new structure, the title you provide must be unique - if another structure exists with the same name your change will fail.
  • Adding a new structure to this list is the only way to request the creation of a new Data Dictionary definition.

Frequently Asked Questions

  • What is an NDA Data Structure?
    An NDA Data Structure is comprised of multiple Data Elements to make up an electronic definition of an assessment, measure, questionnaire, etc will have a corresponding Data Structure.
  • What is the NDA Data Dictionary?
    The NDA Data Dictionary is comprised of electronic definitions known as Data Structures.


  • Analyzed Data
    Data specific to the primary aims of the research being conducted (e.g. outcome measures, other dependent variables, observations, laboratory results, analyzed images, volumetric data, etc.) including processed images.
  • Data Item
    Items listed on the Data Expected list in the Collection which may be an individual and discrete Data Structure, Data Structure Category, or Data Structure Group.
  • Data Structure
    A defined organization and group of Data Elements to represent an electronic definition of a measure, assessment, questionnaire, or collection of data points. Data structures that have been defined in the NDA Data Dictionary are available at https://nda.nih.gov/general-query.html?q=query=data-structure
  • Data Structure Category
    An NDA term describing the affiliation of a Data Structure to a Category, which may be disease/disorder or diagnosis related (Depression, ADHD, Psychosis), specific to data type (MRI, eye tracking, omics), or type of data (physical exam, IQ).
  • Data Structure Group
    A Data Item listed on the Data Expected tab of a Collection that indicates a group of Data Structures (e.g., ADOS or SCID) for which data may be submitted instead of a specific Data Structure identified by version, module, edition, etc. For example, the ADOS Data Structure Category includes every ADOS Data Structure such as ADOS Module 1, ADOS Module 2, ADOS Module 1 - 2nd Edition, etc. The SCID Data Structure Group includes every SCID Data Structure such as SCID Mania, SCID V Mania, SCID PTSD, SCID-V Diagnosis, and more.
  • Evaluated Data
    A new Data Structure category, Evaluated Data is analyzed data resulting from the use of computational pipelines in the Cloud and can be uploaded directly back to a miNDAR database. Evaluated Data is expected to be listed as a Data Item in the Collection's Data Expected Tab.
  • Imaging Data
    Imaging+ is an NDA term which encompasses all imaging related data including, but not limited to, images (DTI, MRI, PET, Structural, Spectroscopy, etc.) as well as neurosignal data (EEG, fMRI, MEG, EGG, eye tracking, etc.) and Evaluated Data.
  • Initial Share Date
    Initial Submission and Initial Share dates should be populated according to the NDA Data Sharing Terms and Conditions. Any modifications to these will go through the approval processes outlined above. Data will be shared with authorized users upon publication (via an NDA Study) or 1-2 years after the grant end date specified on the first Notice of Award, as defined in the applicable Data Sharing Terms and Conditions.
  • Initial Submission Date
    Initial Submission and Initial Share dates should be populated according to these NDA Data Sharing Terms and Conditions. Any modifications to these will go through the approval processes outlined above. Data for all subjects is not expected on the Initial Submission Date and modifications may be made as necessary based on the project's conduct.
  • Research Subject and Pedigree
    An NDA created Data Structure used to convey basic information about the subject such as demographics, pedigree (links family GUIDs), diagnosis/phenotype, and sample location that are critical to allow for easier querying of shared data.
  • Submission Cycle
    The NDA has two Submission Cycles per year - January 15 and July 15.
  • Submission Exemption
    An interface to notify NDA that data may not be submitted during the upcoming/current submission cycle.

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 NameAbstractCollection/Study SubjectsData UsageState
Examining the validity of the use of ratio IQs in psychological assessments IQ tests are amongst the most used psychological assessments, both in research and clinical settings. For participants who cannot complete IQ tests normed for their age, ratio IQ scores (RIQ) are routinely computed and used as a proxy of IQ, especially in large research databases to avoid missing data points. However, because it has never been scientifically validated, this practice is questionable. In the era of big data, it is important to examine the validity of this widely used practice. In this paper, we use the case of autism to examine the differences between standard full-scale IQ (FSIQ) and RIQ. Data was extracted from four databases in which ages, FSIQ scores and subtests raw scores were available for autistic participants between 2 and 17 years old. The IQ tests included were the MSEL (N=12033), DAS-II early years (N=1270), DAS-II school age (N=2848), WISC-IV (N=471) and WISC-V (N=129). RIQs were computed for each participant as well as the discrepancy (DSC) between RIQ and FSIQ. We performed two linear regressions to respectively assess the effect of FSIQ and of age on the DSC for each IQ test, followed by additional analyses comparing age subgroups as well as FSIQ subgroups on DSC. Participants at the extremes of the FSIQ distribution tended to have a greater DSC than participants with average FSIQ. Furthermore, age significantly predicted the DSC, with RIQ superior to FSIQ for younger participants while the opposite was found for older participants. These results question the validity of this widely used alternative scoring method, especially for individuals at the extremes of the normal distribution, with whom RIQs are most often employed.9/17423Secondary AnalysisShared
The importance of low IQ to early diagnosis of autismSome individuals can flexibly adapt to life’s changing demands while others, in particular those with Autism Spectrum Disorder (ASD), find it challenging. The origin of early individual differences in cognitive abilities, the putative tools with which to navigate novel information in life, including in infants later diagnosed with ASD remains unexplored. Moreover, the role of intelligence quotient (IQ) vis-à-vis core features of autism remains debated. We systematically investigate the contribution of early IQ in future autism outcomes in an extremely large, population-based study of 8,000 newborns, infants, and toddlers from the US between 2 and 68 months with over 15,000 cross-sectional and longitudinal assessments, and for whom autism outcomes are ascertained or ruled out by about 2-4 years. This population is representative of subjects involved in the National Institutes of Health (NIH)-funded research, mainly on atypical development, in the US. Analyses using predetermined age bins showed that IQ scores are consistently lower in ASD relative to TD at all ages (p<0.001), and IQ significantly correlates with calibrated severity scores (total CSS, as well as non-verbal and verbal CSS) on the ADOS. Note, VIQ is no better than the full-scale IQ to predict ASD cases. These findings raise new, compelling questions about potential atypical brain circuitry affecting performance in both verbal and nonverbal abilities and that precede an ASD diagnosis. This study is the first to establish prospectively that low early IQ is a major feature of ASD in early childhood. 8/6323Secondary AnalysisShared
Investigating autism etiology and heterogeneity by decision tree algorithmAutism spectrum disorder (ASD) is a neurodevelopmental disorder that causes deficits in cognition, communication and social skills. ASD, however, is a highly heterogeneous disorder. This heterogeneity has made identifying the etiology of ASD a particularly difficult challenge, as patients exhibit a wide spectrum of symptoms without any unifying genetic or environmental factors to account for the disorder. For better understanding of ASD, it is paramount to identify potential genetic and environmental risk factors that are comorbid with it. Identifying such factors is of great importance to determine potential causes for the disorder, and understand its heterogeneity. Existing large-scale datasets offer an opportunity for computer scientists to undertake this task by utilizing machine learning to reliably and efficiently obtain insight about potential ASD risk factors, which would in turn assist in guiding research in the field. In this study, decision tree algorithms were utilized to analyze related factors in datasets obtained from the National Database for Autism Research (NDAR) consisting of nearly 3000 individuals. We were able to identify 15 medical conditions that were highly associated with ASD diagnoses in patients; furthermore, we extended our analysis to the family medical history of patients and we report six potentially hereditary medical conditions associated with ASD. Associations reported had a 90% accuracy. Meanwhile, gender comparisons highlighted conditions that were unique to each gender and others that overlapped. Those findings were validated by the academic literature, thus opening the way for new directions for the use of decision tree algorithms to further understand the etiology of autism. 9/3382Secondary AnalysisShared
Unravelling the Collective Diagnostic Power Behind the Features in the Autism Diagnostic Observation ScheduleBackground: Autism is a group of heterogeneous disorders defined by deficits in social interaction and communication. Typically, diagnosis depends on the results of a behavioural examination called the Autism Diagnostic Observation Schedule (ADOS). Unfortunately, administration of the ADOS exam is time-consuming and requires a significant amount of expert intervention, leading to delays in diagnosis and access to early intervention programs. The diagnostic power of each feature in the ADOS exam is currently unknown. Our hypothesis is that certain features could be removed from the exam without a significant reduction in diagnostic accuracy, sensitivity or specificity. Objective: Determine the smallest subset of predictive features in ADOS module-1 (an exam variant for patients with minimal verbal skills). Methodology: ADOS module-1 datasets were acquired from the Autism Genetic Resource Exchange and the National Database for Autism Research. The datasets contained 2572 samples with the following labels: autism (1763), autism spectrum (513), and non-autism (296). The datasets were used as input to 4 different cost-sensitive classifiers in Weka (functional trees, LADTree, logistic model trees, and PART). For each classifier, a 10-fold cross validation was preformed and the number of predictive features, accuracy, sensitivity, and specificity was recorded. Results & Conclusion: Each classifier resulted in a reduction of the number of ADOS features required for autism diagnosis. The LADtree classifier was able to obtain the largest reduction, utilizing only 10 of 29 ADOS module-1 features (96.8% accuracy, 96.9% sensitivity, and 95.9% specificity). Overall, these results are a step towards a more efficient behavioural exam for autism diagnosis. 6/1832Secondary AnalysisShared
Automated Autism Diagnosis using Phenotypic and Genotypic Attributes: Phase IThe ultimate goal of this project is to develop a predictive system that can automate the diagnosis process for autism using phenotypic and genotypic attributes for classification. At this time, only a first phase is being pursued: starting with scores from Autism Diagnostic Observation Schedule (ADOS) reports, use data-mining techniques to select the smallest set of the most informative evaluation points that can lead to similar behavioral diagnoses as using all report features. The effort began in March, 2016 after data access to NDAR was granted. This report describes the results from that date through the end of December 2016.2/1045Secondary AnalysisShared
* Data not on individual level

NDA Help Center

Collection - Associated Studies

Clicking on the Study Title will open the study details in a new internet browser tab. The Abstract is available for viewing, providing the background explanation of the study, as provided by the Collection Owner.

Primary v. Secondary Analysis: The Data Usage column will have one of these two choices. An associated study that is listed as being used for Primary Analysis indicates at least some and potentially all of the data used was originally collected by the creator of the NDA Study. Secondary Analysis indicates the Study owner was not involved in the collection of data, and may be used as supporting data.

Private v. Shared State: Studies that remain private indicate the associated study is only available to users who are able to access the collection. A shared study is accessible to the general public.

Frequently Asked Questions

  • How do I associate a study to my collection?
    Studies are associated to the Collection automatically when the data is defined in the Study.


  • Associated Studies Tab
    A tab in a Collection that lists the NDA Studies that have been created using data from that Collection including both Primary and Secondary Analysis NDA Studies.