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 Status: The visibility status of an NDA Collection.  Collection Status can be Shared or Private.  Collections in Shared status are visible to all users and can be searched in the NDA Query Tool. Private Collections are not visible to NDA users.  The Status of an NDA Collection only affects the visibility of information about the Collection (metadata) and does not relate to the status of the record-level research data in the NDA Collection.

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/about/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

  • When a Collection is created by NDA staff and marked as Shared, an email notification will automatically be sent to the PI(s) of the grant(s) associated with the Collection to notify them.

  • 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.

  • 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.

  • 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

  • Number of human subjects enrolled in an NIH-funded clinical research study. The data is provided in annual progress reports.

  • 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. 

  • 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.

  • 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.
  • The Collection State indicates whether the Collection is viewable and searchable.  Collections can be either Private, Shared, or an Ongoing Study.  A Collection that is shared does not necessarily have shared data as the Collection State and state of data are independent of each other.  This field can be edited by Collection users with Administrative Privileges and the Program Officer as listed in eRA (for NIH funded grants). Changes must be saved by clicking the Save button at the bottom of the page.

  • An editable field with the title of the Collection, which is often the title of the grant associated with the Collection.

  • 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.

  • 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.

  • 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. 

  • 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. 

  • 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.

  • 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.

  • 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.  

  • The total number of unique subjects for whom data have been shared and are available for users with permission to access data.

NDA Help Center

Collection - Shared Data Tab

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

  • 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.  

  • 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.

  • 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

  • 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

  • A grouping of data by similar characteristics such as Clinical Assessments, Omics, or Neurosignal data.

  • The term 'Shared' generally means available to others; however, there are some slightly different meanings based on what is Shared.  A Shared NDA Collection or NDA Study is viewable and searchable publicly regardless of the user's role or whether the user has an NDA account.  A Shared Collection or NDA Study does not necessarily mean that data submitted to the Collection or 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, but will only be viewable and accessible if the Collection is Shared.

NDA Help Center

fMRi

fMRI stands for functional magnetic resonance imaging. fMRI tests measure blood flow, providing detailed functional images of the brain or body. 

Acquisition
The Acquisition parameters needed for an experiment include the following:

The name of the experiment is required. Please be concise and specific as possible.
Following experiment name, selection boxes are provided for the Equipment, Software, or other items specific to the experiment type. At least one selection is required for each. If NDAR does not have the appropriate listing, select Add New to add the information provided. Following the selection boxes, provide additional information may be required depending on the experiment type. Any required items are denoted by an asterisk (*).

Block/Event Design
At least one block/event is required. Note that any fields denoted with an asterisk (*) are required. All data must be devoid of personally identifiable data, including the contents of any files attached to the experiment.

Note: To simplify the definition of multiple events, we provide an Import from XML function. This function supports importing data from all three experiment sections (Acquisition, Block/Event Design, and Post Processing), at this time files cannot be uploaded from XML A test format is provided here and our XML Schema Definition (xsd) can be found here.

Post Processing
If you have completed any post-processing on your data, please choose 'Yes' for Has Postprocessing? If not, select 'No'. Depending on this selection the remaining post-processing fields will be enabled (some of which will be required). If you are initially providing data you can select 'No', then return to the experiment to add post-processing steps at a later date when the data are being provided.

Please provide information about post-processing manipulations, i.e. artifact detection algorithms, segmentation used for post data collection, items denoted with an asterisk (*) are required.

Frequently Asked Questions

Glossary

  • This button will add all selections to the Filter Cart. 

  • This button will allow you to copy all of the Experiment details as a template for a new experiment. 

  • Adds all data from the current selections in a Collection or NDA Study to the Filter Cart.

  • This button will allow you to return to the Experiments tab. 

NDA Help Center

Collection - Submissions Tab

Users with permission to access Shared data in the Collection’s assigned Permission Group may use this tab. 

Here, you can:

  • Review your uploads to your Collection, monitor their status, and download them individually to verify their contents.
  • Download individual datasets as a secondary user of the data approved for access.
  • Identify and download datasets containing errors identified by NDA's QA/QC process for review and resolution.
  • Report suspected or discovered Personally Identifiable Information in a submission via the Actions column.

Frequently Asked Questions

Glossary

  • The default view of Datasets within a Collection's Submission tab.

  • A Submission Loading Status on a Collection's Submission Tab that indicates that an issue has prevented the successful loading of the submission.  Users should contact the NDA Help Desk for assistance at NDAHelp@mail.nih.gov.

  • The NDA has two Submission Cycles per year - January 15 and July 15.

  • An interface to notify NDA that data may not be submitted during the upcoming/current submission cycle.  

  • The unique and sequentially assigned ID for a submission (e.g. a discrete upload via the Validation and Upload Tool), which may contain any number of datafiles, Data Structures and/or Data Types, regardless of the Submission Loading Status. A single submission may be divided into multiple Datasets, which are based on Data Type.

  • The total number of unique subjects for whom data have been shared and are available for users with permission to access data.

  • The total number of unique subjects for whom data have been submitted, which includes data in both a Private State and a Shared State.

NDA Help Center

Collection - Publications Tab

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

  • Publications are considered relevant to a collection when the data shared is directly related to the project or collection.

  • PubMed, an online library containing journals, articles, and medical research. Sponsored by NiH and National Library of Medicine (NLM). 

Glossary

  • 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.

  • 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.

  • 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 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.

  • The PUBMed ID is the unique ID number for the publication as recorded in the PubMed database.  

  • 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.

NDA Help Center

EEG

EEG stands for electroencencephalogram and is a test used to measure electrical activity in the brain.

Acquisition
The Acquisition parameters needed for an experiment include the following:

Name of the experiment is required. Please be concise and specific as possible.
Following experiment name, selection boxes are provided for the Equipment, Software, or other items specific to experiment type. At least one selection is required for each. If NDAR does not have the appropriate listing, select Add New to add the information provided. Following the selection boxes, provide additional information may be required depending on experiment type. Any required items are denoted by an asterisk (*).

Block/Event Design
At least one block/event is required. Note that any fields denoted with an asterisk (*) are required. All data must be devoid of personally identifiable data, including the contents of any files attached to the experiment.

Note: To simplify definition of multiple events, we provide an Import from XML function. This function supports importing data from all three experiment sections (Acquisition, Block/Event Design, and Post Processing), at this time files cannot be uploaded from XML A test format is provided here and our XML Schema Definition (xsd) can be found here.

Post Processing
If you have completed any post processing on your data, please choose 'Yes' for Has Postprocessing? If not, select 'No'. Depending on this selection the remaining post processing fields will be enabled (some of which will be required). If you are initially providing data you can select 'No', then return to the experiment to add post processing steps at a later date when the data are being provided.

Please provide information about post-processing manipulations, i.e. artifact detection algorithms, segmentation used for post data collection, items denoted with an asterisk (*) are required.

Frequently Asked Questions

Glossary

  • This button will add all selections to the Filter Cart. 

  • This button will allow you to copy all of the Experiment details as a template for a new experiment. 

  • Adds all data from the current selections in a Collection or NDA Study to the Filter Cart.

  • This button will allow you to return to the Experiments tab. 

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.

Contributing researchers just getting started on their project will need to define this list by adding all of the items they are collecting under their grant and setting their schedule according to the NDA Data Sharing Regimen. If you fall into this category, you can begin by clicking "add new Data Expected" and selecting which data structures you will be using, saving the page after each change, or requesting new structures by adding and naming a new item, providing any materials NDA Data Dictionary Curators can use to help define your structure. For more information see the tutorial on creating Data Expected.

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

  • 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.

  • The NDA Data Dictionary is comprised of electronic definitions known as Data Structures.

Glossary

  • 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.

  • 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.

  • 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

  • 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).

  • 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. 

  • 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+ 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 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 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.

  • 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.

  • The NDA has two Submission Cycles per year - January 15 and July 15.

  • An interface to notify NDA that data may not be submitted during the upcoming/current submission cycle.  

NDA Help Center

Collection - Permissions Tab

Collection Owners, Program Officers, and users with Administrator privileges may view this tab.

The available permission groups include:

  • Query: This read-only access is generally for NIH Program Officers
  • Submission: This will grant read access and allow the user to upload data and create experiment definitions. This is for the typical contributing personnel member.
  • Administrator: In addition to the access provided to Query and Submission users, Admins can also edit the Collection itself, create or edit the Data Expected list, and edit user permissions. This access is for the PI, data managers, and anyone they wish to delegate this to.

The PI has a special designation as the Collection Owner in addition to administrator access.

Frequently Asked Questions

  • Collection Owners and Admins may assign Collection Privileges to anyone.

  • Yes, you can assign various Privileges to other users with an NDA account.

  • If you are the Collection Owner or have Admin privileges, you can view and make changes to the list of individuals who have access to the Collection on the Collection's Permissions tab.  Information on users who have access to data Shared in your Collection because they were granted access to a Permission Group is not available.

  • Staff/collaborators who are working submitting data to the Collection, checking the quality of the data, and/or analyzing data should have access for the duration of the project until all data have been submitted, NDA Studies have been created for data used in publications, and/or a collaborative relationship with the user exists.  

  • The individual listed as an Investigator on the General tab of the NDA Collection will generally be able to provide a user access to the NDA Collection.  Additional users may also have this ability if granted Administrator access to an NDA Collection; however, these users are not viewable unless your account has access to the NDA Collection.  Given this, it is best to contact the Investigator to request access to the Collection.

  • Privileges that can be assigned to a user include:
    Submission allows a user to submit data to Collection
    Query allows the user to download data from Collection even when in a Private state
    Admin is both the Submission and Query Privilege + the ability to give privileges to other users.

  • You may have staff who are working on the submission of data or other activities associated with data sharing such as the definition of the Data Expected list or NDA Experiment creation.  Also, many projects have multiple performance sites and wish to share data among the site PIs.  Submitting to the NDA facilitates access by all investigators working on a project even before data have been shared with other users.  You can control who gets access to data while in a Private state.

Glossary

  • 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. 

  • 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.

NDA Help Center

Eye Tracking

EyeTracking tests follow the movement of the eye. The visual trajectory or focus can help determine predictions and assist in diagnoses. 

Acquisition
The Acquisition parameters needed for an experiment include the following:

The name of the experiment is required. Please be concise and specific as possible.
Following experiment name, selection boxes are provided for the Equipment, Software, or other items specific to the experiment type. At least one selection is required for each. If NDAR does not have the appropriate listing, select Add New to add the information provided. Following the selection boxes, provide additional information may be required depending on the experiment type. Any required items are denoted by an asterisk (*).

Block/Event Design
At least one block/event is required. Note that any fields denoted with an asterisk (*) are required. All data must be devoid of personally identifiable data, including the contents of any files attached to the experiment.

Note: To simplify the definition of multiple events, we provide an Import from XML function. This function supports importing data from all three experiment sections (Acquisition, Block/Event Design, and Post Processing), at this time files cannot be uploaded from XML A test format is provided here and our XML Schema Definition (xsd) can be found here.

Post Processing
If you have completed any post-processing on your data, please choose 'Yes' for Has Postprocessing? If not, select 'No'. Depending on this selection the remaining post-processing fields will be enabled (some of which will be required). If you are initially providing data you can select 'No', then return to the experiment to add post-processing steps at a later date when the data are being provided.

Please provide information about post-processing manipulations, i.e. artifact detection algorithms, segmentation used for post data collection, items denoted with an asterisk (*) are required.

Frequently Asked Questions

Glossary

  • This button will add all selections to the Filter Cart. 

  • This button will allow you to copy all of the Experiment details as a template for a new experiment. 

  • Adds all data from the current selections in a Collection or NDA Study to the Filter Cart.

  • This button will allow you to return to the Experiments tab. 

NDA Help Center

Collection - Experiments Tab

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

  • 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

  • An Experiment must be Approved before data using the associated Experiment_ID may be uploaded.

  • 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.

NDA Help Center

Omics

Omics is a collective group of technologies, related to a field of study in Biology such as Genomics or proteomics. 

Experiment Parameters

To define an Omics experiment, provide a meaningful name and select a single molecule. The standard molecules are listed. However, if you are doing proteomic or environmental experiments, simply “Add New” and the new selection will be created. Only one value for molecule is permitted.

Next the technology (box 2) associated with the molecule will be presented along with its application. Again, only one selection is possible. If you wish to see all of NDAR’s options for any one box, Select “Show All”.

Platform

Continue to select the Platform (box 3).

Extraction

Next, the Extraction Protocol (box 4) and Kits (box 5) are presented based upon the Molecule selected and the Processing Protocol (box 6) and Kits (box 7) are presented based upon the Molecule and Technology Application (Box 1 and 2)

Processing

Note that for each of these (boxes 4, 5, 6, and 7) multiple selections are possible.

Additional Information

Lastly, the Software (box 8) and Equipment (box 9) is expected.

 

Once saved, the experiment will be associated with the Collection and by using the returned Experiment_ID, the NDA makes it possible to associate the experiment meta data directly with the data from the experiment.

Frequently Asked Questions

Glossary

  • This button will add all selections to the Filter Cart. 

  • This button will allow you to copy all of the Experiment details as a template for a new experiment. 

  • Adds all data from the current selections in a Collection or NDA Study to the Filter Cart.

  • This button will allow you to return to the Experiments tab. 

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

  • Studies are associated to the Collection automatically when the data is defined in the Study. 

Glossary

  • 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.

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Format should be in the following format: Activity Code, Institute Abbreviation, and Serial Number. Grant Type, Support Year, and Suffix should be excluded. For example, grant 1R01MH123456-01A1 should be entered R01MH123456

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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
24HI-NGS_R1Omics02/16/2011
475MB1-10 (CHOP)Omics06/07/2016
490Illumina Infinium PsychArray BeadChip AssayOmics07/07/2016
501PharmacoBOLD Resting StatefMRI07/27/2016
506PVPREFOmics08/05/2016
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
26ASD_MethylationOmics03/01/2011
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
41ImmunofluorescenceOmics05/11/2011
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
519RestingfMRI11/08/2016
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
145AGRE/FMR1_Illumina.JHUOmics04/14/2014
146AGRE/MECP2_Sanger.JHUOmics04/14/2014
147AGRE/MECP2_Junior.JHUOmics04/14/2014
151Candidate Gene Identification in familial AutismOmics06/09/2014
152NJLAGS Whole Genome SequencingOmics07/01/2014
154Math Autism Study - Vinod MenonfMRI07/15/2014
155RestingfMRI07/25/2014
156SpeechfMRI07/25/2014
159EmotionfMRI07/25/2014
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
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Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
Longitudinal Studies of Autism Spectrum Disorders: From 2 to 23
Cathy Lord, Ph. D 
Longitudinal Studies of Autism Spectrum Disorders (ASD): From 2 to 23 - Increasing Understanding of Nonverbal School-Aged Children and Children with Limited Language Skills
NIMH Data Archive
07/12/2012
Funding Completed
Close Out
Shared
No
$1,611,971.00
63
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NIH - Extramural None


R01MH081873-01 Longitudinal Studies of Autism Spectrum Disorders: 2 to 23 09/01/2008 05/31/2013 219 175 UNIVERSITY OF MICHIGAN AT ANN ARBOR $1,611,971.00

helpcenter.collection.general-tab

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 Status: The visibility status of an NDA Collection. Collection Status can be Shared or Private. Collections in Shared status are visible to all users and can be searched in the NDA Query Tool. Private Collections are not visible to NDA users. The Status of an NDA Collection only affects the visibility of information about the Collection (metadata) and does not relate to the status of the record-level research data in the NDA Collection.

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/about/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 withAdministrator privileges, may upload and attach supporting documentation. By default, supporting documentation is shared to the general public, however, the optionis also available tolimit 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 capturedby 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 do I know when a NDA Collection has been created???
    When a Collection is created by NDA staff and marked as Shared, an email notification will automatically be sent to the PI(s) of the grant(s) associated with the Collection to notify them.
  • 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.
  • 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.

Glossary

  • Actual Enrollment
    Number of human subjects enrolled in an NIH-funded clinical research study. The data is provided in annual progress reports.
IDNameCreated DateStatusType
No records found.

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

Shared Data

Data structures with the number of subjects submitted and shared are provided.

Aberrant Behavior Checklist (ABC) - Community Clinical Assessments 56
Adapted ADOS Module 1 Clinical Assessments 45
Adapted ADOS Module 2 Clinical Assessments 6
Autism Diagnostic Interview, Revised (ADI-R) Clinical Assessments 59
Autism Diagnostic Observation Schedule (ADOS) - Module 1 (2007) Clinical Assessments 1
Autism Diagnostic Observation Schedule (ADOS) - Module 2 (2007) Clinical Assessments 2
Autism Diagnostic Observation Schedule (ADOS)- Module 3 (2007) Clinical Assessments 3
Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2) - Module 3 Clinical Assessments 5
Child Behavior Checklist (CBCL) 6-18 Clinical Assessments 57
DAS-II:Differential Ability Scales 2nd Ed. Early Years Clinical Assessments 45
Mullen Scales of Early Learning Clinical Assessments 42
Peabody Picture Vocabulary Test, Fourth Edition-Form A Clinical Assessments 1
Pubertal Development Scale Clinical Assessments 15
Repetitive Behavior Scale - Revised (RBS-R) Clinical Assessments 55
Services Log Clinical Assessments 50
Social Communication Questionnaire (SCQ) - Lifetime Clinical Assessments 57
TEACCH Transition Assessment Profile Clinical Assessments 21
Vineland-II - Survey Form (2005) Clinical Assessments 61
Wide Range Achievement Test 4 (WRAT4) Clinical Assessments 36

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 IDStudyTitleJournalAuthorsDateStatus
34890046Create StudyDiagnostic stability in individuals with autism spectrum disorder: insights from a longitudinal follow-up study.Journal of child psychology and psychiatry, and allied disciplinesElias, Rebecca; Lord, CatherineDecember 10, 2021Not Determined
34516710Create StudyWork and well-being: Vocational activity trajectories in young adults with autism spectrum disorder.Autism research : official journal of the International Society for Autism ResearchClarke, Elaine B; Sterrett, Kyle; Lord, CatherineDecember 1, 2021Not Determined
34120483Create StudyInfluence of siblings on adaptive behavior trajectories in autism spectrum disorder.Autism : the international journal of research and practiceRosen, Nicole E; McCauley, James B; Lord, CatherineJanuary 1, 2022Not Determined
33633633Create StudyPredicting Uncertain Multi-Dimensional Adulthood Outcomes From Childhood and Adolescent Data in People Referred to Autism Services.Frontiers in psychologyForbes, Gordon; Lord, Catherine; Elias, Rebecca; Pickles, AndrewJanuary 1, 2021Not Determined
33220430Create StudyPost-High School Daily Living Skills in Autism Spectrum Disorder.Journal of the American Academy of Child and Adolescent PsychiatryClarke, Elaine B; McCauley, James B; Lord, CatherineAugust 1, 2021Not Determined
32851813Create StudyDefining Positive Outcomes in More and Less Cognitively Able Autistic Adults.Autism research : official journal of the International Society for Autism ResearchMcCauley, James B; Pickles, Andrew; Huerta, Marisela; Lord, CatherineSeptember 2020Not Determined
32677592Create StudyTrajectories of co-occurring psychopathology symptoms in autism from late childhood to adulthood.Development and psychopathologyMcCauley, James B; Elias, Rebecca; Lord, CatherineOctober 1, 2020Not Determined
32431163Create StudyWork, living, and the pursuit of happiness: Vocational and psychosocial outcomes for young adults with autism.Autism : the international journal of research and practiceLord, Catherine; McCauley, James B; Pepa, Lauren A; Huerta, Marisela; Pickles, AndrewOctober 2020Not Determined
32314393Create StudySex differences in scores on standardized measures of autism symptoms: a multisite integrative data analysis.Journal of child psychology and psychiatry, and allied disciplinesKaat, Aaron J; Shui, Amy M; Ghods, Sheila S; Farmer, Cristan A; Esler, Amy N; Thurm, Audrey; Georgiades, Stelios; Kanne, Stephen M; Lord, Catherine; Kim, Young Shin; Bishop, Somer LJanuary 2021Not Determined
31957035Create StudyThe adult outcome of children referred for autism: typology and prediction from childhood.Journal of child psychology and psychiatry, and allied disciplinesPickles, Andrew; McCauley, James B; Pepa, Lauren A; Huerta, Marisela; Lord, CatherineJuly 2020Not Determined
31949163Create StudyAutism spectrum disorder.Nature reviews. Disease primersLord, Catherine; Brugha, Traolach S; Charman, Tony; Cusack, James; Dumas, Guillaume; Frazier, Thomas; Jones, Emily J H; Jones, Rebecca M; Pickles, Andrew; State, Matthew W; Taylor, Julie Lounds; Veenstra-VanderWeele, JeremyJanuary 16, 2020Not Determined
31736004Create StudyThe Adapted ADOS: A New Module Set for the Assessment of Minimally Verbal Adolescents and Adults.Journal of autism and developmental disordersBal, Vanessa H; Maye, Melissa; Salzman, Emma; Huerta, Marisela; Pepa, Lauren; Risi, Susan; Lord, CatherineMarch 2020Not Determined
31429087Create StudyPredictors of longer-term development of expressive language in two independent longitudinal cohorts of language-delayed preschoolers with Autism Spectrum Disorder.Journal of child psychology and psychiatry, and allied disciplinesBal, Vanessa H; Fok, Megan; Lord, Catherine; Smith, Isabel M; Mirenda, Pat; Szatmari, Peter; Vaillancourt, Tracy; Volden, Joanne; Waddell, Charlotte; Zwaigenbaum, Lonnie; Bennett, Terry; Duku, Eric; Elsabbagh, Mayada; Georgiades, Stelios; Ungar, Wendy J; Zaidman-Zait, AnatJuly 2020Not Determined
30101492Create StudyAutism spectrum disorder symptoms from ages 2 to 19 years: Implications for diagnosing adolescents and young adults.Autism research : official journal of the International Society for Autism ResearchBal VH, Kim SH, Fok M, Lord CJanuary 2019Not Determined
28949003Create StudyLongitudinal follow-up of academic achievement in children with autism from age 2 to 18.Journal of child psychology and psychiatry, and allied disciplinesKim, So Hyun; Bal, Vanessa H; Lord, CatherineMarch 2018Not Determined
28638592Create StudyEvaluating the quality of peer interactions in children and adolescents with autism with the Penn Interactive Peer Play Scale (PIPPS).Molecular autismJones, Rebecca M; Pickles, Andrew; Lord, CatherineJanuary 2017Not Relevant
27871640Create StudyMultidimensional Influences on Autism Symptom Measures: Implications for Use in Etiological Research.Journal of the American Academy of Child and Adolescent PsychiatryHavdahl, Karoline Alexandra; Hus Bal, Vanessa; Huerta, Marisela; Pickles, Andrew; Øyen, Anne-Siri; Stoltenberg, Camilla; Lord, Catherine; Bishop, Somer LDecember 2016Not Determined
27282463Create StudyThe autism symptom interview, school-age: A brief telephone interview to identify autism spectrum disorders in 5-to-12-year-old children.Autism research : official journal of the International Society for Autism ResearchBishop, Somer L; Huerta, Marisela; Gotham, Katherine; Alexandra Havdahl, Karoline; Pickles, Andrew; Duncan, Amie; Hus Bal, Vanessa; Croen, Lisa; Lord, CatherineJanuary 2017Not Determined
27090613Create StudyUse of machine learning to improve autism screening and diagnostic instruments: effectiveness, efficiency, and multi-instrument fusion.Journal of child psychology and psychiatry, and allied disciplinesBone, Daniel; Bishop, Somer L; Black, Matthew P; Goodwin, Matthew S; Lord, Catherine; Narayanan, Shrikanth SAugust 1, 2016Not Determined
26908679Create StudyAutism Spectrum Disorder, Intellectual Disability, and Delayed Walking.PediatricsBishop, Somer L; Thurm, Audrey; Farmer, Cristan; Lord, CatherineMarch 2016Not Determined
26748412Create StudySubdimensions of social-communication impairment in autism spectrum disorder.Journal of child psychology and psychiatry, and allied disciplinesBishop, Somer L; Havdahl, Karoline Alexandra; Huerta, Marisela; Lord, CatherineAugust 1, 2016Not Determined
26385796Create StudyReplication and Comparison of the Newly Proposed ADOS-2, Module 4 Algorithm in ASD Without ID: A Multi-site Study.Journal of autism and developmental disordersPugliese, Cara E; Kenworthy, Lauren; Bal, Vanessa Hus; Wallace, Gregory L; Yerys, Benjamin E; Maddox, Brenna B; White, Susan W; Popal, Haroon; Armour, Anna Chelsea; Miller, Judith; Herrington, John D; Schultz, Robert T; Martin, Alex; Anthony, Laura GutermuthDecember 2015Not Determined
26140652Create StudyUtility of the Child Behavior Checklist as a Screener for Autism Spectrum Disorder.Autism research : official journal of the International Society for Autism ResearchHavdahl, K Alexandra; von Tetzchner, Stephen; Huerta, Marisela; Lord, Catherine; Bishop, Somer LJanuary 2016Not Determined
25959391Create StudyDevelopmental trajectories as autism phenotypes.American journal of medical genetics. Part C, Seminars in medical geneticsLord, Catherine; Bishop, Somer; Anderson, DeborahJune 2015Not Determined
25922445Create StudyDaily living skills in individuals with autism spectrum disorder from 2 to 21 years of age.Autism : the international journal of research and practiceBal, Vanessa Hus; Kim, So-Hyun; Cheong, Daniel; Lord, CatherineOctober 2015Not Determined
25901773Create StudyDepressive and anxiety symptom trajectories from school age through young adulthood in samples with autism spectrum disorder and developmental delay.Journal of the American Academy of Child and Adolescent PsychiatryGotham, Katherine; Brunwasser, Steven M; Lord, CatherineMay 2015Not Determined
25832801Create StudyThe Autism Diagnostic Observation Schedule, Toddler Module: Standardized Severity Scores.Journal of autism and developmental disordersEsler, Amy N; Bal, Vanessa Hus; Guthrie, Whitney; Wetherby, Amy; Ellis Weismer, Susan; Lord, CatherineSeptember 2015Not Determined
25774214Create StudyThe relationship of motor skills and adaptive behavior skills in young children with autism spectrum disorders.Research in autism spectrum disordersMacDonald, Megan; Lord, Catherine; Ulrich, DaleNovember 2013Not Determined
25712123Create StudyReplication of Standardized ADOS Domain Scores in the Simons Simplex Collection.Autism research : official journal of the International Society for Autism ResearchHus Bal, Vanessa; Lord, CatherineOctober 2015Not Determined
25243378Create StudyHow interview questions are placed in time influences caregiver description of social communication symptoms on the ADI-R.Journal of child psychology and psychiatry, and allied disciplinesJones, Rebecca M; Risi, Susan; Wexler, Diana; Anderson, Deborah; Corsello, Christina; Pickles, Andrew; Lord, CatherineMay 2015Not Relevant
25239176Create StudyMeasurement of nonverbal IQ in autism spectrum disorder: scores in young adulthood compared to early childhood.Journal of autism and developmental disordersBishop, Somer L; Farmer, Cristan; Thurm, AudreyApril 2015Not Determined
24916450Create StudyDepression and its measurement in verbal adolescents and adults with autism spectrum disorder.Autism : the international journal of research and practiceGotham, Katherine; Unruh, Kathryn; Lord, CatherineMay 2015Not Relevant
24802136Create StudyRumination and perceived impairment associated with depressive symptoms in a verbal adolescent-adult ASD sample.Autism research : official journal of the International Society for Autism ResearchGotham, Katherine; Bishop, Somer L; Brunwasser, Steven; Lord, CatherineJune 2014Not Determined
24762385Create StudyMotor skills and calibrated autism severity in young children with autism spectrum disorder.Adapted physical activity quarterly : APAQMacDonald M, Lord C, Ulrich DAApril 2014Not Determined
24590409Create StudyThe autism diagnostic observation schedule, module 4: revised algorithm and standardized severity scores.Journal of autism and developmental disordersHus, Vanessa; Lord, CatherineAugust 2014Not Determined
24313878Create StudyPredicting young adult outcome among more and less cognitively able individuals with autism spectrum disorders.Journal of child psychology and psychiatry, and allied disciplinesAnderson, Deborah K; Liang, Jessie W; Lord, CatherineMay 2014Not Determined
23488613Create StudyCommentary: Advancing measurement of ASD severity and social competence: a reply to Constantino and Frazier (2013).Journal of child psychology and psychiatry, and allied disciplinesHus, Vanessa; Bishop, Somer; Gotham, Katherine; Huerta, Marisela; Lord, CatherineJune 1, 2013Not Determined
23258569Create StudyExploring the relationship between anxiety and insistence on sameness in autism spectrum disorders.Autism research : official journal of the International Society for Autism ResearchGotham, Katherine; Bishop, Somer L; Hus, Vanessa; Huerta, Marisela; Lund, Sabata; Buja, Andreas; Krieger, Abba; Lord, CatherineFebruary 2013Not Determined
23223363Create StudyAttachment in young children with autism spectrum disorders: an examination of separation and reunion behaviors with both mothers and fathers.Autism : the international journal of research and practiceGrzadzinski RL, Luyster R, Spencer AG, Lord CFebruary 2014Not Determined
23153932Create StudyDiagnosing autism in neurobiological research studies.Behavioural brain researchJones, Rebecca M; Lord, CatherineAugust 15, 2013Not Determined
23143131Create StudyStandardizing ADOS domain scores: separating severity of social affect and restricted and repetitive behaviors.Journal of autism and developmental disordersHus, Vanessa; Gotham, Katherine; Lord, CatherineOctober 2014Not Determined
23065116Create StudySubcategories of restricted and repetitive behaviors in children with autism spectrum disorders.Journal of autism and developmental disordersBishop, Somer L; Hus, Vanessa; Duncan, Amie; Huerta, Marisela; Gotham, Katherine; Pickles, Andrew; Kreiger, Abba; Buja, Andreas; Lund, Sabata; Lord, CatherineJune 2013Not Determined
23032385Create StudyApplication of DSM-5 criteria for autism spectrum disorder to three samples of children with DSM-IV diagnoses of pervasive developmental disorders.The American journal of psychiatryHuerta, Marisela; Bishop, Somer L; Duncan, Amie; Hus, Vanessa; Lord, CatherineOctober 2012Not Determined
22823182Create StudyFactors influencing scores on the social responsiveness scale.Journal of child psychology and psychiatry, and allied disciplinesHus, Vanessa; Bishop, Somer; Gotham, Katherine; Huerta, Marisela; Lord, CatherineFebruary 2013Not Determined
22729382Create StudyEffects of child characteristics on the Autism Diagnostic Interview-Revised: implications for use of scores as a measure of ASD severity.Journal of autism and developmental disordersHus V, Lord CFebruary 2013Not Determined
22486486Create StudyAnnual research review: re-thinking the classification of autism spectrum disorders.Journal of child psychology and psychiatry, and allied disciplinesLord C, Jones RMMay 2012Not Determined
22065253Create StudyA multisite study of the clinical diagnosis of different autism spectrum disorders.Archives of general psychiatryLord, Catherine; Petkova, Eva; Hus, Vanessa; Gan, Weijin; Lu, Feihan; Martin, Donna M; Ousley, Opal; Guy, Lisa; Bernier, Raphael; Gerdts, Jennifer; Algermissen, Molly; Whitaker, Agnes; Sutcliffe, James S; Warren, Zachary; Klin, Ami; Saulnier, Celine; Hanson, Ellen; Hundley, Rachel; Piggot, Judith; Fombonne, Eric; Steiman, Mandy; Miles, Judith; Kanne, Stephen M; Goin-Kochel, Robin P; Peters, Sarika U; Cook, Edwin H; Guter, Stephen; Tjernagel, Jennifer; Green-Snyder, Lee Anne; Bishop, Somer; Esler, Amy; Gotham, Katherine; Luyster, Rhiannon; Miller, Fiona; Olson, Jennifer; Richler, Jennifer; Risi, SusanMarch 2012Not Determined
21905806Create StudyChanges in maladaptive behaviors from midchildhood to young adulthood in autism spectrum disorder.American journal on intellectual and developmental disabilitiesAnderson, Deborah K; Maye, Melissa P; Lord, CatherineSeptember 2011Not Determined
21905802Create StudyConvergent validity of the Mullen Scales of Early Learning and the differential ability scales in children with autism spectrum disorders.American journal on intellectual and developmental disabilitiesBishop, Somer L; Guthrie, Whitney; Coffing, Mia; Lord, CatherineSeptember 2011Not Determined
21610184Create StudyMotor skills of toddlers with autism spectrum disorders.Autism : the international journal of research and practiceLloyd M, MacDonald M, Lord CMarch 2013Not Determined
21410473Create StudyTelescoping of caregiver report on the Autism Diagnostic Interview--Revised.Journal of child psychology and psychiatry, and allied disciplinesHus V, Taylor A, Lord CJuly 2011Not Determined
21078305Create StudyIs schizophrenia on the autism spectrum?Brain researchKing, Bryan H; Lord, CatherineMarch 22, 2011Not Determined
21058793Create StudyAutism: from research to practice.The American psychologistLord CENovember 2010Not Determined
20589716Create StudyRestricted and repetitive behaviors in toddlers and preschoolers with autism spectrum disorders based on the Autism Diagnostic Observation Schedule (ADOS).Autism research : official journal of the International Society for Autism ResearchKim SH, Lord CAugust 2010Not Determined
20559336Create StudyBehavioural phenotyping assays for mouse models of autism.Nature reviews. NeuroscienceSilverman, Jill L; Yang, Mu; Lord, Catherine; Crawley, Jacqueline NJuly 2010Not Determined
20195735Create StudyEarly language patterns of toddlers on the autism spectrum compared to toddlers with developmental delay.Journal of autism and developmental disordersEllis Weismer, Susan; Lord, Catherine; Esler, AmyOctober 2010Not Determined
19127655Create StudyEvidence for latent classes of IQ in young children with autism spectrum disorder.American journal of mental retardation : AJMRMunson, Jeffrey; Dawson, Geraldine; Sterling, Lindsey; Beauchaine, Theodore; Zhou, Andrew; Elizabeth, Koehler; Lord, Catherine; Rogers, Sally; Sigman, Marian; Estes, Annette; Abbott, RobertNovember 2008Not Determined

Relevant Publications
PubMed IDStudyTitleJournalAuthorsDate
No records found.

You can use "Add New Data Expected" to add exsiting structures and create your project's list. However, this is also the method you can use to request new structures be created for your project. When adding the Data Expected item, if the structure already exists you can locate it and specify your dates and enrollment. To add a new structure and request it be defined in the Data Dictionary, select Upload Definition and attach the definition or material needed to create it, including manual, codebooks, forms, etc. If you have multiple files, please upload a zipped archive containing them all.

Expected dates should be selected based on the standard Data Sharing Regimen and are restricted to within date ranges based on the project start and end dates.

Data Expected
Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Mullen Scales of Early Learning info icon
12905/31/2014
42
Approved
ABC Community info icon
12907/15/2012
56
Approved
ADOS info icon
12905/31/2014
62
Approved
ADI-R info icon
12905/31/2014
59
Approved
Social Communication Questionnaire (SCQ) info icon
12905/31/2014
57
Approved
Child Behavior Checklist (CBCL) info icon
12905/31/2014
57
Approved
Pubertal Development Scale (PDS) info icon
12905/31/2014
15
Approved
DAS-II: Differential Ability Scales info icon
12905/31/2014
45
Approved
Peabody Picture Vocabulary Test, Fourth Edition info icon
12905/31/2014
1
Approved
Repetitive Behavior Scale - Revised (RBS-R) info icon
12907/15/2012
55
Approved
Research Subject and Pedigree info icon
12907/15/2012
0
Approved
TEACCH Transition Assessment Profile, 2nd Ed. (TTAP) info icon
12905/31/2014
21
Approved
Wide Range Achievement Test info icon
12905/31/2014
36
Approved
Vineland (Parent and Caregiver) info icon
12905/31/2014
61
Approved
Structure not yet defined
No Status history for this Data Expected has been recorded yet

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.60/17423Secondary AnalysisShared
Characterizing Auditory Hyperreactivity in AutismObjective: To answer the following research questions: 1) What is the prevalence of auditory hyper-reactivity in ASD? 2) Does auditory hyper-reactivity severity change with age? and 3) What are the most common auditory stimuli reported to be bothersome? Research Design: Primarily descriptive secondary data analysis. Methods: Type of data: Questionnaire items regarding auditory hyper-reactivity will be filtered from: Autism Diagnostic Interview-Revised, Sensory Profile (all forms), Sensory Over-Responsivity Scale, and Sensory Experiences Questionnaire in addition to demographics (i.e., age, race, ethnicity, diagnoses). Analysis Plan: Descriptive statistics, tables and figures will be used to summarize the prevalence and severity of auditory hyper-reactivity by age. Linear regression modeling will be used to evaluate changes in auditory hyper-reactivity by age. If data is available for control subjects, statistical analyses will be conducted for means comparison (ASD vs. non-ASD). 59/7001Secondary AnalysisPrivate
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. 5/3382Secondary AnalysisShared
Gender differences in restricted and repetitive behaviors and interests in autismBackground: The female autism phenotype has been defined by differences in core autism spectrum disorder (ASD) symptomology related to reciprocal social communication and restricted and repetitive behaviors and interests (RRBI). Previous research on RRBI in ASD has found that affected boys have increased stereotyped and restricted behaviors compared to girls with ASD (Hiller, Young, & Weber, 2014; Mandy et al., 2012). Other domains of RRBI (i.e., self-injurious, compulsive, and insistence on sameness behaviors), which contribute to DSM-5 diagnosis, are less studied and have not been examined across gender. To date, no studies have examined gender differences using a comprehensive RRBI measure, which spans stereotyped, self-injurious, compulsive, insistence on sameness, and restricted behavior domains. Objectives: To investigate whether symptoms of RRBI (i.e., stereotyped, self-injurious, ritualistic, compulsive, insistence on sameness, and restricted behavior), as measured by item-level data on the Repetitive Behavior Scale-Revised (RBS-R), can classify males versus females with ASD. Methods: Participants included 615 youth with ASD (507 males; 82.4%), between 3 and 18 years of age (M=10.26, SD=4.20), who agreed to share data with the National Database for Autism Research (NDAR). A stepwise discriminant function analysis (DFA) was used to predict the degree RBS-R data could correctly classify gender in a large sample of individuals with ASD. Standardized canonical function coefficients (SCFC) from the DFA represent the contribution of each variable to the discrimination between groups, with greater SCFC indicating greater discrimination. Results: DFA results suggest that RBS-R items significantly differentiate girls versus boys with ASD, Wilks’ λ=0.89, χ2=70.79, p<0.001. Of note, gender was classified based on a set of 8 items (see table 1). Interestingly, the items that differentiated boys from girls did not solely consist of higher stereotyped and restricted behavior in boys (as indicated by negative SCFC scores). Half of the items that differentiated gender were higher in females with ASD (as indicated by positive SCFC scores) and from the self-injurious, compulsive, and insistence on sameness domains. This set of RBS-R items had greater success in correctly classifying boys with ASD (67.90%) than in correctly classifying affected girls (61.00%). Conclusions: This study extends findings of gender differences in RRBI for ASD, demonstrating that girls with ASD may demonstrate higher self-injurious, compulsive, and insistence on sameness behavior than affected boys. It is important for future research to disentangle whether these elevated rates of RRBI in girls with ASD are central to the female autism phenotype or an epiphenomenon of the high rates of co-occurring disorders (e.g., anxiety) noted in affected girls. 3/612Secondary AnalysisPrivate
Critical test items to differentiate individuals with SPCD from those with ASD and typical controlsSocial (pragmatic) communication disorder (SPCD) is a new category in the DSM-5. This study used IRT modelling to analyze archive data of item responses to the Social Communication Question-Lifetime (SCQ) from the National Database of Autism Research (NDAR), to select critical test items that could efficiently differentiate SPCD from ASD and TD. Methods: The SCQ records were downloaded from the NDAR. The item difficulty values and participants ability in the social communication and repetitive behavior and restricted interests were estimated through Winsteps. The items with difficulty values mostly matching the participants ability at the cut-off zones among three groups were selected. Result: The eight test items were identified for screening SPCD with 75% sensitivity. The specificity for differentiating SPCD from TD and ASD is 86.27% and 68.9% respectively. Conclusion: This study provides a short list of critical items that could be used to screen SPCD from TD and ASD. 2/151Secondary AnalysisPrivate
* Data not on individual level
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