NIMH Data Archive - Data

Genomics

Neuroimaging

Phenotype¹

New Trial
Clinical Trial

¹ Numbers reported are subjects by age

New Project
Grant/Project Number

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

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.

Select	Experiment Id	Experiment Name	Experiment Type	Created On

24	HI-NGS_R1	Omics	02/16/2011
475	MB1-10 (CHOP)	Omics	06/07/2016
490	Illumina Infinium PsychArray BeadChip Assay	Omics	07/07/2016
501	PharmacoBOLD Resting State	fMRI	07/27/2016
506	PVPREF	Omics	08/05/2016
509	ABC-CT Resting v2	EEG	08/18/2016
13	Comparison of FI expression in Autistic and Neurotypical Homo Sapiens	Omics	12/28/2010
18	AGRE/Broad Affymetrix 5.0 Genotype Experiment	Omics	01/06/2011
22	Stitching PCR Sequencing	Omics	02/14/2011
26	ASD_Methylation	Omics	03/01/2011
29	Microarray family 03 (father, mother, sibling)	Omics	03/24/2011
37	Standard paired-end sequencing of BCRs	Omics	04/19/2011
38	Illumina Mate-Pair BCR sequencing	Omics	04/19/2011
39	Custom Jumping Libraries	Omics	04/19/2011
40	Custom CapBP	Omics	04/19/2011
41	Immunofluorescence	Omics	05/11/2011
43	Autism brain sample genotyping, Illumina	Omics	05/16/2011
47	ARRA Autism Sequencing Collaboration at Baylor. SOLiD 4 System	Omics	08/01/2011
53	AGRE Omni1-quad	Omics	10/11/2011
59	AGP genotyping	Omics	04/03/2012
60	Ultradeep 454 sequencing of synaptic genes from postmortem cerebella of individuals with ASD and neurotypical controls	Omics	06/23/2012
63	Microemulsion PCR and Targeted Resequencing for Variant Detection in ASD	Omics	07/20/2012
76	Whole Genome Sequencing in Autism Families	Omics	01/03/2013
519	Resting	fMRI	11/08/2016
90	Genotyped IAN Samples	Omics	07/09/2013
91	NJLAGS Axiom Genotyping Array	Omics	07/16/2013
93	AGP genotyping (CNV)	Omics	09/06/2013
106	Longitudinal Sleep Study. H20 200. Channel set 2	EEG	11/07/2013
107	Longitudinal Sleep Study. H20 200. Channel set 3	EEG	11/07/2013
108	Longitudinal Sleep Study. AURA 200	EEG	11/07/2013
105	Longitudinal Sleep Study. H20 200. Channel set 1	EEG	11/07/2013
109	Longitudinal Sleep Study. AURA 400	EEG	11/07/2013
116	Gene Expression Analysis WG-6	Omics	01/07/2014
131	Jeste Lab UCLA ACEii: Charlie Brown and Sesame Street - Project 1	Eye Tracking	02/27/2014
132	Jeste Lab UCLA ACEii: Animacy - Project 1	Eye Tracking	02/27/2014
133	Jeste Lab UCLA ACEii: Mom Stranger - Project 2	Eye Tracking	02/27/2014
134	Jeste Lab UCLA ACEii: Face Emotion - Project 3	Eye Tracking	02/27/2014
145	AGRE/FMR1_Illumina.JHU	Omics	04/14/2014
146	AGRE/MECP2_Sanger.JHU	Omics	04/14/2014
147	AGRE/MECP2_Junior.JHU	Omics	04/14/2014
151	Candidate Gene Identification in familial Autism	Omics	06/09/2014
152	NJLAGS Whole Genome Sequencing	Omics	07/01/2014
154	Math Autism Study - Vinod Menon	fMRI	07/15/2014
155	Resting	fMRI	07/25/2014
156	Speech	fMRI	07/25/2014
159	Emotion	fMRI	07/25/2014
160	syllable contrast	EEG	07/29/2014
167	School-age naturalistic stimuli	Eye Tracking	09/19/2014
44	AGRE/Broad Affymetrix 5.0 Genotype Experiment	Omics	06/27/2011
45	Exome Sequencing of 20 Sporadic Cases of Autism Spectrum Disorder	Omics	07/15/2011

Collection - Add Experiment

Add Supporting Documentation

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URL:

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.

Collection Updated

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Emergence and Stability of Autism in Fragile X Syndrome #1888

General
Experiments (1)
Shared Data
Publications (73)
Data Expected (13)
Associated Studies (5)

Collection Title	Collection Investigators	Collection Description
Collection Title:	Emergence and Stability of Autism in Fragile X Syndrome
Collection Investigators:	Jane Roberts
Collection Description:	FXS Demographics, General Demographics, and Mullen Scores
Data Repository:	NIMH Data Archive
Permission Group:
Collection Creation Date:	01/10/2012
Collection Phase:	Funding Completed
Collection Sub-Phase:	Close Out
Blinded Clinical Trial:	No
Total Funded Amount:	$803,314.00
Subjects Shared:	47

{"values":[]}

{"values":[["Fragile X",70],["Not Defined",68],["Autism Spectrum Affected",10],["Autism Spectrum Mildly Affected",12],["Typical Control",14],["Autism Spectrum Severely Affected",2]]}

Loading Chart...

Funding Sources:

Funding Source Name	Funding Source URL
NIH - Extramural	None

Supporting Documentation:

File Name	File Type	Description	Audience
LABTab USC Manual.docx	Methods	LABTab USC Manual	Qualified Researchers

Grant Information:

Project Number	Project Title	Start Date	End Date	Planned Enrollment	Actual Enrollment	Organization	Funds Obligated
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

Clinical Trials:

helpcenter.collection.general-tab

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).

Glossary

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.

Contact NDA Help Desk

ID	Name	Created Date	Status	Type
595	Infant Attention and Face Processing	01/13/2017	Approved	EEG

helpcenter.collection.experiments-tab

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.

Glossary

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.

Contact NDA Help Desk

Shared Data:

Title	Type	Number of Subjects
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

helpcenter.collection.shared-data-tab

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.

Glossary

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.

Contact NDA Help Desk

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 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 ID	Study	Title	Journal	Authors	Date	Status
38246961	Create Study	Similar Gap-Overlap Profiles in Children with Fragile X Syndrome and IQ-Matched Autism.	Journal of autism and developmental disorders	Wall, Carla A; Shic, Frederick; Will, Elizabeth A; Wang, Quan; Roberts, Jane E	January 21, 2024	Not Determined
37961141	Create Study	The Effect of Anxiety and Autism Symptom Severity on Restricted and Repetitive Behaviors Over Time in Children with Fragile X Syndrome.	Research square	Moskowitz, Lauren; Will, Elizabeth; Black, Conner; Roberts, Jane	November 2, 2023	Not Determined
37020738	Create Study	Negative affect and respiratory sinus arrhythmia are differentially related to social anxiety and autism features in autistic preschoolers contrasted to fragile X syndrome.	Frontiers in psychiatry	Wall, Carla A; Roberts, Jane E	January 1, 2023	Not Determined
36408848	Create Study	Distinct social attention profiles in preschoolers with autism contrasted to fragile X syndrome.	Autism research : official journal of the International Society for Autism Research	Wall, Carla A; Shic, Frederick; Varanasi, Sreeja; Roberts, Jane E	February 1, 2023	Not Determined
36138866	Create Study	Cortical Source Analysis of the Face Sensitive N290 ERP Component in Infants at High Risk for Autism.	Brain sciences	Guy, Maggie W; Richards, John E; Roberts, Jane E	August 25, 2022	Not Determined
36082630	Create Study	ADHD 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 adolescence	Hunt, Erin; Hogan, Abigail; Will, Elizabeth A; Roberts, Jane E	July 1, 2023	Not Determined
35046845	Create Study	Cardiac Startle Response and Clinical Outcomes in Preschool Children With Fragile X Syndrome and Autism Spectrum Disorder.	Frontiers in psychiatry	Ezell, Jordan; Hogan, Abigail; Will, Elizabeth A; Smith, Kayla; Roberts, Jane	January 1, 2021	Not Determined
34899412	Create Study	Neural Correlates of Infant Face Processing and Later Emerging Autism Symptoms in Fragile X Syndrome.	Frontiers in psychiatry	Guy, Maggie W; Richards, John E; Hogan, Abigail L; Roberts, Jane E	January 1, 2021	Not Determined
34700347	Create Study	Motor Influences on Communication: Comparisons Between Down Syndrome and Fragile X Syndrome.	American journal on intellectual and developmental disabilities	Will, Elizabeth A; Roberts, Jane E	November 1, 2021	Not Determined
34690833	Create Study	Trajectories of Heart Activity Across Infancy to Early Childhood Differentially Predict Autism and Anxiety Symptoms in Fragile X Syndrome.	Frontiers in psychiatry	Hogan, Abigail; Hunt, Erin; Smith, Kayla; Black, Conner; Bangert, Katherine; Klusek, Jessica; Roberts, Jane	January 1, 2021	Not Determined
34674252	Create Study	Peak selection and latency jitter correction in developmental event-related potentials.	Developmental psychobiology	Guy, Maggie W; Conte, Stefania; Bursalıoğlu, Aslı; Richards, John E	November 1, 2021	Not Determined
34674246	Create Study	A single-session behavioral protocol for successful event-related potential recording in children with neurodevelopmental disorders.	Developmental psychobiology	Guy, Maggie W; Black, Conner J; Hogan, Abigail L; Coyle, Ramsey E; Richards, John E; Roberts, Jane E	November 1, 2021	Not Determined
33911031	Create Study	Emergence of Developmental Delay in Infants and Toddlers With an FMR1 Mutation.	Pediatrics	Wheeler, 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 B	May 1, 2021	Not Determined
33743580	Create Study	Early behavioral and physiological markers of social anxiety in infants with fragile X syndrome.	Journal of neurodevelopmental disorders	Black, Conner J; Hogan, Abigail L; Smith, Kayla D; Roberts, Jane E	March 20, 2021	Not Determined
33651888	Create Study	Attention Bias and Prodromal Anxiety Symptoms in Toddlers With Fragile X Syndrome and Down Syndrome.	American journal on intellectual and developmental disabilities	Smith, Kayla; Hogan, Abigail L; Will, Elizabeth; Roberts, Jane E	March 1, 2021	Not Determined
33161907	Create Study	Emergence and rate of autism in fragile X syndrome across the first years of life.	Development and psychopathology	Roberts, Jane E; Bradshaw, Jessica; Will, Elizabeth; Hogan, Abigail L; McQuillin, Samuel; Hills, Kimberly	October 1, 2020	Not Determined
32661519	Create Study	Autism Spectrum Disorder-Associated Behaviour in Infants with Down Syndrome.	Journal of health science & education	Hahn, Laura J; Hamrick, Lisa M; Kelleher, Bridgette L; Roberts, Jane E	January 2020	Not Determined
32221748	Create Study	Restricted and Repetitive Behaviors in Males and Females with Fragile X Syndrome: Developmental Trajectories in Toddlers Through Young Adults.	Journal of autism and developmental disorders	Moskowitz, Lauren J; Will, Elizabeth A; Black, Conner J; Roberts, Jane E	November 2020	Not Determined
32044434	Create Study	Face-sensitive brain responses in the first year of life.	NeuroImage	Conte, Stefania; Richards, John E; Guy, Maggie W; Xie, Wanze; Roberts, Jane E	May 2020	Not Determined
32020687	Create Study	Anxiety and threat-related attentional biases in adolescents with fragile X syndrome.	Journal of intellectual disability research : JIDR	Kelleher, B L; Hogan, A L; Ezell, J; Caravella, K; Schmidt, J; Wang, Q; Roberts, J E	April 2020	Not Determined
31586494	Create Study	Developmental divergence: motor trajectories in children with fragile X syndrome with and without co-occurring autism.	Journal of neurodevelopmental disorders	Will, Elizabeth A; Bishop, Somer L; Roberts, Jane E	October 2019	Not Determined
31519170	Create Study	Early negative affect in males and females with fragile X syndrome: implications for anxiety and autism.	Journal of neurodevelopmental disorders	Wall CA, Hogan AL, Will EA, Mcquillin S, Kelleher BL, Roberts JE	September 2019	Not Determined
31407873	Create Study	Acoustic properties of early vocalizations in infants with fragile X syndrome.	Autism research : official journal of the International Society for Autism Research	Hamrick, Lisa R; Seidl, Amanda; Tonnsen, Bridgette L	November 2019	Not Determined
31251678	Create Study	Gesture 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 : JSLHR	Hughes KR, Hogan AL, Roberts JE, Klusek J	July 2019	Not Determined
31165359	Create Study	Social Avoidance Emerges in Infancy and Persists into Adulthood in Fragile X Syndrome.	Journal of autism and developmental disorders	Roberts J, Crawford H, Hogan AL, Fairchild A, Tonnsen B, Brewe A, O'Connor S, Roberts DA, Abbeduto L	September 2019	Not Determined
31133885	Create Study	Infant Social Avoidance Predicts Autism but Not Anxiety in Fragile X Syndrome.	Frontiers in psychiatry	Roberts, Jane E; Crawford, Hayley; Will, Elizabeth A; Hogan, Abigail L; McQuillin, Samuel; Tonnsen, Bridgette L; O'Connor, Shannon; Roberts, Douglas A; Brewe, Alexis M	January 2019	Not Determined
30396281	Create Study	Infant 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 53	Tonnsen, Bridgette L; Wheeler, Anne C; Hamrick, Lisa R; Roberts, Jane E	May 2019	Not Determined
30382442	Create Study	ASD Comorbidity in Fragile X Syndrome: Symptom Profile and Predictors of Symptom Severity in Adolescent and Young Adult Males.	Journal of autism and developmental disorders	Abbeduto L, Thurman AJ, Mcduffie A, Klusek J, Feigles RT, Ted Brown W, Harvey DJ, Adayev T, Lafauci G, Dobkins C, Roberts JE	March 2019	Not Determined
30197656	Create Study	Curvilinear Association Between Language Disfluency and FMR1 CGG Repeat Size Across the Normal, Intermediate, and Premutation Range.	Frontiers in genetics	Klusek, Jessica; Porter, Anna; Abbeduto, Leonard; Adayev, Tatyana; Tassone, Flora; Mailick, Marsha R; Glicksman, Anne; Tonnsen, Bridgette L; Roberts, Jane E	January 1, 2018	Not Determined
30155926	Create Study	Initiating joint attention use in infants at high-risk for autism spectrum disorder.	Journal of intellectual disability research : JIDR	Brewe, A M; Reisinger, D L; Adlof, S M; Roberts, J E	October 2018	Not Determined
30097759	Create Study	Vagal Tone as a Putative Mechanism for Pragmatic Competence: An Investigation of Carriers of the FMR1 Premutation.	Journal of autism and developmental disorders	Klusek, Jessica; Fairchild, Amanda J; Roberts, Jane E	January 2019	Not Determined
29781139	Create Study	Early gesture use in fragile X syndrome.	Journal of intellectual disability research : JIDR	Rague L, Caravella K, Tonnsen B, Klusek J, Roberts J	July 2018	Not Determined
29671637	Create Study	Reading in Children With Fragile X Syndrome: Phonological Awareness and Feasibility of Intervention.	American journal on intellectual and developmental disabilities	Adlof, Suzanne M; Klusek, Jessica; Hoffmann, Anne; Chitwood, Kerrie L; Brazendale, Allison; Riley, Karen; Abbeduto, Leonard J; Roberts, Jane E	May 2018	Not Determined
29480774	Create Study	The Emergence of Effortful Control in Young Boys With Fragile X Syndrome.	American journal on intellectual and developmental disabilities	Robinson, Marissa; Klusek, Jessica; Poe, Michele D; Hatton, Deborah D; Roberts, Jane E	March 2018	Not Determined
29439664	Create Study	Heart rate-defined sustained attention in infants at risk for autism.	Journal of neurodevelopmental disorders	Tonnsen, Bridgette L; Richards, John E; Roberts, Jane E	February 2018	Not Determined
29399949	Create Study	Adaptive 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 Genetics	Will, Elizabeth A; Caravella, Kelly E; Hahn, Laura J; Fidler, Deborah J; Roberts, Jane E	April 2018	Not Determined
29171019	Create Study	Cortisol profiles differentiated in adolescents and young adult males with fragile X syndrome versus autism spectrum disorder.	Developmental psychobiology	Matherly, Sara M; Klusek, Jessica; Thurman, Angela J; McDuffie, Andrea; Abbeduto, Leonard; Roberts, Jane E	January 2018	Not Determined
29170682	Create Study	Adaptive Skill Trajectories in Infants with Fragile X Syndrome Contrasted to Typical Controls and Infants at High Risk for Autism.	Research in autism spectrum disorders	Caravella, Kelly E; Roberts, Jane E	August 2017	Not Determined
29040924	Create Study	Early social communication in infants with fragile X syndrome and infant siblings of children with autism spectrum disorder.	Research in developmental disabilities	Hahn, Laura J; Brady, Nancy C; McCary, Lindsay; Rague, Lisa; Roberts, Jane E	December 2017	Not Determined
28972453	Create Study	Impaired eye contact in the FMR1 premutation is not associated with social anxiety or the broad autism phenotype.	The Clinical neuropsychologist	Klusek, Jessica; Ruber, Alexis; Roberts, Jane E	August 2018	Not Determined
28895261	Create Study	The effects of optimism, religion, and hope on mood and anxiety disorders in women with the FMR1 premutation.	Journal of intellectual disability research : JIDR	Lowell, E P; Tonnsen, B L; Bailey, D B; Roberts, J E	October 2017	Not Determined
28856552	Create Study	Behavioral Markers of Emergent Stranger Anxiety in Infants and Toddlers with Fragile X Syndrome.	Journal of autism and developmental disorders	Tonnsen, Bridgette; Scherr, Jessica; Reisinger, Debra; Roberts, Jane	November 2017	Not Determined
28846036	Create Study	Differential Relationships of Anxiety and Autism Symptoms on Social Skills in Young Boys With Fragile X Syndrome.	American journal on intellectual and developmental disabilities	Reisinger DL, Roberts JE	September 2017	Not Determined
28835209	Create Study	Altered sensitivity to social gaze in the FMR1 premutation and pragmatic language competence.	Journal of neurodevelopmental disorders	Klusek, Jessica; Schmidt, Joseph; Fairchild, Amanda J; Porter, Anna; Roberts, Jane E	August 2017	Not Relevant
28469730	Create Study	Reduced vagal tone in women with the FMR1 premutation is associated with FMR1 mRNA but not depression or anxiety.	Journal of neurodevelopmental disorders	Klusek, Jessica; LaFauci, Giuseppe; Adayev, Tatyana; Brown, W Ted; Tassone, Flora; Roberts, Jane E	January 2017	Relevant
28372982	Create Study	Neural correlates of face processing in etiologically-distinct 12-month-old infants at high-risk of autism spectrum disorder.	Developmental cognitive neuroscience	Guy, Maggie W; Richards, John E; Tonnsen, Bridgette L; Roberts, Jane E	January 2018	Relevant
28281129	Create Study	Autism Spectrum Disorder Symptoms in Infants with Fragile X Syndrome: A Prospective Case Series.	Journal of autism and developmental disorders	Hogan, Abigail L; Caravella, Kelly E; Ezell, Jordan; Rague, Lisa; Hills, Kimberly; Roberts, Jane E	June 2017	Not Determined
28247019	Create Study	A 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 disorders	Belardi, Katie; Watson, Linda R; Faldowski, Richard A; Hazlett, Heather; Crais, Elizabeth; Baranek, Grace T; McComish, Cara; Patten, Elena; Oller, D Kimbrough	April 2017	Relevant
28210826	Create Study	Stranger Fear and Early Risk for Social Anxiety in Preschoolers with Fragile X Syndrome Contrasted to Autism Spectrum Disorder.	Journal of autism and developmental disorders	Scherr, Jessica F; Hogan, Abigail L; Hatton, Deborah; Roberts, Jane E	December 1, 2017	Not Determined
27628938	Create Study	Brief Report: Autism Symptoms in Infants with Fragile X Syndrome.	Journal of autism and developmental disorders	Roberts, Jane E; Tonnsen, Bridgette L; McCary, Lindsay M; Caravella, Kelly E; Shinkareva, Svetlana V	December 2016	Relevant
26914466	Create Study	Physiological Correlates of Maternal Responsivity in Mothers of Preschoolers With Fragile X Syndrome.	American journal on intellectual and developmental disabilities	Robinson, Ashley N; Roberts, Jane E; Brady, Nancy C; McQuillin, Samuel D; Warren, Steven F	March 2016	Relevant
26895548	Create Study	Pragmatic 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 : JSLHR	Klusek J, Mcgrath SE, Abbeduto L, Roberts JE	February 2016	Relevant
26864160	Create Study	Infant Development in Fragile X Syndrome: Cross-Syndrome Comparisons.	Journal of autism and developmental disorders	Roberts, Jane E; McCary, Lindsay M; Shinkareva, Svetlana V; Bailey Jr, Donald B	June 1, 2016	Relevant
26760450	Create Study	HPA axis function predicts development of working memory in boys with FXS.	Brain and cognition	Scherr, Jessica F; Hahn, Laura J; Hooper, Stephen R; Hatton, Deborah; Roberts, Jane E	February 2016	Relevant
26610738	Create Study	The emergence and stability of attention deficit hyperactivity disorder in boys with fragile X syndrome.	Journal of intellectual disability research : JIDR	Grefer, M; Flory, K; Cornish, K; Hatton, D; Roberts, J	February 2016	Relevant
26500715	Create Study	Teaching reading to youth with fragile X syndrome: Should phonemic awareness and phonics instruction be used?	EBP briefs	Randel, Allison; Adlof, Suzanne; Klusek, Jessica; Roberts, Jane	March 2015	Not Relevant
26300270	Create Study	Trajectory and Predictors of Depression and Anxiety Disorders in Mothers With the FMR1 Premutation.	Biological psychiatry	Roberts, Jane E; Tonnsen, Bridgette L; McCary, Lindsay M; Ford, Amy L; Golden, Robert N; Bailey Jr, Donald B	May 15, 2016	Relevant
25715182	Create Study	Language development in infants and toddlers with fragile X syndrome: change over time and the role of attention.	American journal on intellectual and developmental disabilities	Kover, Sara T; McCary, Lindsay M; Ingram, Alexandra M; Hatton, Deborah D; Roberts, Jane E	March 2015	Relevant
25462466	Create Study	Developmental trajectories of attentional control in preschool males with fragile X syndrome.	Research in developmental disabilities	Tonnsen BL, Grefer ML, Hatton DD, Roberts JE	October 14, 2014	Relevant
25448919	Create Study	Reading and phonological skills in boys with fragile X syndrome.	Journal of autism and developmental disorders	Klusek J, Hunt AW, Mirrett PL, Hatton DD, Hooper SR, Roberts JE, Bailey DB	June 2015	Relevant
25420222	Create Study	Cardiac autonomic regulation in autism and Fragile X syndrome: a review.	Psychological bulletin	Klusek, Jessica; Roberts, Jane E; Losh, Molly	January 2015	Not Relevant
25191537	Create Study	The Development of Adaptive Behavior in Toddlers and Preschoolers with Fragile X versus Autism.	International journal of developmental disabilities	McCary, Lindsay M; Machlin, Laura; Roberts, Jane E	July 1, 2013	Relevant
24889646	Create Study	Phonological awareness and reading in boys with fragile X syndrome.	Journal of child psychology and psychiatry, and allied disciplines	Adlof SM, Klusek J, Shinkareva SV, Robinson ML, Roberts JE	January 2015	Relevant
24832235	Create Study	Maternal 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 Genetics	Tonnsen, Bridgette L; Cornish, Kim M; Wheeler, Anne C; Roberts, Jane E	July 2014	Relevant
24432858	Create Study	Biobehavioral indicators of social fear in young children with fragile X syndrome.	American journal on intellectual and developmental disabilities	Tonnsen BL, Shinkareva SV, Deal SC, Hatton DD, Roberts JE	November 2013	Relevant
24432854	Create Study	Biomarkers, behavior, and intellectual and developmental disabilities.	American journal on intellectual and developmental disabilities	Symons FJ, Roberts JE	November 2013	Not Relevant
24380785	Create Study	Temperament factor structure in fragile X syndrome: the children''s behavior questionnaire.	Research in developmental disabilities	Roberts, Jane E; Tonnsen, Bridgette L; Robinson, Marissa; McQuillin, Samuel D; Hatton, Deborah D	February 2014	Relevant
23143607	Create Study	Cardiovascular and behavioral response to auditory stimuli in boys with fragile X syndrome.	Journal of pediatric psychology	Roberts JE, Long AC, McCary LM, Quady AN, Rose BS, Widrick D, Baranek G	April 2013	Relevant
23011214	Create Study	Early negative affect predicts anxiety, not autism, in preschool boys with fragile X syndrome.	Journal of abnormal child psychology	Tonnsen BL, Malone PS, Hatton DD, Roberts JE	February 2013	Relevant
22974167	Create Study	Early identification of autism in fragile X syndrome: a review.	Journal of intellectual disability research : JIDR	McCary LM, Roberts JE	September 2013	Not Relevant
22515825	Create Study	Heart activity and autistic behavior in infants and toddlers with fragile X syndrome.	American journal on intellectual and developmental disabilities	Roberts JE, Tonnsen B, Robinson A, Shinkareva SV	March 2012	Relevant
22071788	Create Study	Behavioral and physiological responses to child-directed speech of children with autism spectrum disorders or typical development.	Journal of autism and developmental disorders	Watson, Linda R; Roberts, Jane E; Baranek, Grace T; Mandulak, Kerry C; Dalton, Jennifer C	August 2012	Relevant
21720726	Create Study	Visual attention and autistic behavior in infants with fragile X syndrome.	Journal of autism and developmental disorders	Roberts JE, Hatton DD, Long AC, Anello V, Colombo J	June 2012	Relevant

helpcenter.collection.publications-tab

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).

Glossary

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.

Contact NDA Help Desk

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 Expected	Targeted Enrollment	Initial Submission	Subjects Submitted	Initial Share	Subjects Shared	Status
Research Subject and Pedigree	130	07/15/2017	130	11/15/2017	0	Approved

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 Expected	Targeted Enrollment	Initial Submission	Subjects Submitted	Initial Share	Subjects Shared	Status
Mullen Scales of Early Learning	130	02/29/2016	125	06/30/2016	9	Approved
ADOS	130	01/15/2014	103	05/15/2014	17	Approved
ADI-R	39	06/15/2014	29	11/15/2014	0	Approved
Genetic Test	26	02/28/2017	49	02/28/2018	24	Approved
Infant Behavior Questionnaire (IBQ)	175	09/02/2015	107	06/28/2016	0	Approved
Demographics	130	07/15/2012	136	11/15/2012	6	Approved
Autism Observation Scale for Infants (AOSI)	77	02/28/2017	111	06/30/2017	0	Approved
Communication and Symbolic Behavior Scales (CSBS)	91	09/02/2015	61	06/28/2016	0	Approved
Physical Exam	130	01/15/2017	110	05/15/2017	0	Approved
Early Childhood Behavioral Questionnaire (ECBQ)	90	09/02/2015	105	06/28/2016	0	Approved
EEG	130	02/28/2017	0	06/30/2017	0	Approved
Laboratory Temperament Assessment Battery	120	02/28/2017	70	06/30/2018	0	Approved

Structure not yet defined

No Status history for this Data Expected has been recorded yet

helpcenter.collection.data-expected-tab

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.

Glossary

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.

Contact NDA Help Desk

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 NameFilter by Study Name	AbstractFilter by Abstract	Collection/Study SubjectsFilter by Collection/Study Subjects	Data UsageFilter by Data Usage	StateFilter by State
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.	9/17423	Secondary Analysis	Shared
The importance of low IQ to early diagnosis of autism	Some 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.	8/6323	Secondary Analysis	Shared
Investigating autism etiology and heterogeneity by decision tree algorithm	Autism 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.	9/3382	Secondary Analysis	Shared
Unravelling the Collective Diagnostic Power Behind the Features in the Autism Diagnostic Observation Schedule	Background: 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.	6/1832	Secondary Analysis	Shared
Automated Autism Diagnosis using Phenotypic and Genotypic Attributes: Phase I	The 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.	2/1045	Secondary Analysis	Shared

* Data not on individual level

helpcenter.collection.associated-studies-tab

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.

Glossary

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.

Contact NDA Help Desk

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