NDA Help Center

NDA Study - Summary Tab

The NDA Study Summary Tab provides a summary of information for the NDA Study.  The information orginates from other NDA Study Tabs, so is not editable.  This tab is viewable by the General Public and is the page in which the DOI for the study will resolve.  Important attributes of this page are the study abstract, the results, the DOI of the NDA Study, the type of analysis that was done (i.e. primary or secondary analysis).  If the study was defined as secondary analysis, an attribution report is displayed showing the number of subjects from each of the projects that contributed data to the study.  

Frequently Asked Questions

  • The individual listed as an Investigator on the General tab of the NDA Collection and any individuals defined as administrators can be provided this privilege.  When the study is shared, all of those that have approved access to the data are given read-only access.  

  • The list of Collections from which data were used in creating the NDA Study will be provided if the study is defined as Secondary Analysis.  

  • The DOI for the NDA Study is expected to be included in the Acknowledgements of a paper (or public disclosure of results) according to the terms in the NDA Data Submission Agreement or NDA Data Use Certification for users using NDA shared data.

  • A DOI is automatically issued when an NDA Study is first created and saved.  However, the DOI will not become active until the NDA Study is shared.  

Glossary

  • The Abstract of the publication or other public disclosure of analysis results.  The publication abstract is automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection.  The field is editable.

  • The Analysis Study Type is primarily used to share a pipeline; however, it could be used to share a statistical analysis or method.   

  • Lists the Collection Title and ID from which data have been used in the NDA Study and provides a count of unique subjects for each originating Collection. 

  • A Clinical Trial Study is a finding specific to a clinical trial.

  • The Collection ID number is a four digit number routinely expressed as C####.

  • Identifies the NDA Study as a Primary Analysis or Secondary Analysis.

  • 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.

  • A persistent and unique identifier that is issued for each NDA Study that may increase the visibility of a researcher's work. Authors are expected to reference the location of data in the publication using the DOI. 

  • Provides links to additional documentation to help explain the NDA Study.

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

  • The Edit Button allows a user to modify or add information once authenticated and if the user has appropriate permissions.

  • Viewable at the top right of NDA pages, the Filter Cart is a temporary holder of data identified by the user through querying or browsing as being of some potential interest. The Filter Cart adds data using an AND condition. The opportunity to further refine data to determine what will be downloaded or sent to a miNDAR is available on the Data Packaging Page, the next step after the Filter Cart.  Subsequent access to data is restricted by User Permission or Privilege; however Filter Cart use is not.

  • The Finding Study Type associates data to a publication or some type of result.   

  • The authors of the publication or other public disclosure of analysis results.  The publication's authors are automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection.  The field is editable and uses a last name, first name format with multiple names separated by semicolons.

  • 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. 

  • The NDA user, who does not necessarily have to be one of the Investigators listed in the NDA Study, primarily involved in creating the NDA Study who is serving as the point of contact. The NDA user who creates the NDA Study is automatically assigned as the Study Owner.

  • The email address of the Study Owner, which may be used to contact the Investigators involved in the NDA Study and/or the associated publication.

  • Primary Analysis is one of the Data Use types NDA recongizes for NDA Studies. It indicates that the NDA Study's creator was involved in the collection of the data (in whole or in part) used in the NDA Study. In other words, at least some and potentially all of the data used was originally collected by the creator of the NDA Study. A Primary Analysis Study.

  • The name of the lead investigator of the analysis using a last name, first name format.  The field is editable.

  • The term 'Private' generally means not available to others; however, there are some slightly different meanings based on what is Private.  The default state for an NDA Collection, NDA Study, Supporting Documentation, and data is Private and, therefore, accessible only to those users with appropriate Privileges so it will not be viewable and searchable publicly.  A Collection may be Shared while the data and Supporting Documentation remain Private. 

  • A static, curated data set.

  • Provides a link to the publication or other public disclosure of analysis results defined in the NDA Study.

  • The Return Button brings the user back to the Data from Papers page.

  • Secondary Analysis is one of the Data Use types NDA recognizes for NDA Studies. It indicates that the NDA Study's creator was not involved in the collection of the data (in whole or in part) used in the NDA Study, but was involved in the analysis of those data. In other words, none of the data used was originally collected by the creator of the NDA Study. A Secondary Analysis Study will provide an Attribution Report listing the Collections and the researchers responsibile for collecting and depositing the original data.

  • Allows a user with appropriate Privileges to Share the NDA Study.  If required information is missing, the Study will not be shared and a warning message wiill appear to provide direction.

  • 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.

  • The Study ID number is a unique three digit number routinely expressed as S### that is assigned by the NDA.

  • The Study State indicates indicates whether the Study is viewable, searchable, and if the associated data can be accessed by users with appropriate data access Permissions.  The default Study State is Private, which means that only the Collection Owner and users with Read Only Privileges.  Only the Study Owner can Share the Study.

  • The Study Title is generally the title of the publication or other public disclosure of analysis results.  The publication title is automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection.  The field is editable.

  • The NDA Study Type can be either Analysis (i.e. often associated with a computational pipeline), Clinical Trial, Finding (i.e. a result associated with a publication, or Release (i.e. a dataset release, often annually) to indicate the type of work defined in the NDA Study.  Studies. once shared do not change.  

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NDA Study - Types Tab

The Arms/Comparison, Description, and Intervention Type options, defined by the NDA Study Owner for either an Observational Study or Controlled Study, are shown.  The NDA allows those that define a Study to define their own arms, descriptions or intervention types as needed, however, to support harmonization, these must first be approved by the NDA prior to sharing the study.  

Frequently Asked Questions

  • Make sure that you drill down to the correct location where you want the new option to be placed by clicking the arrows.  The new option will be placed beneath the highlighted option.

  • Click the Add New button to add a new option. Note that the option added will need to be approved by the NDA prior to the study being shared.  

Glossary

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

  • Viewable at the top right of NDA pages, the Filter Cart is a temporary holder of data identified by the user through querying or browsing as being of some potential interest. The Filter Cart adds data using an AND condition. The opportunity to further refine data to determine what will be downloaded or sent to a miNDAR is available on the Data Packaging Page, the next step after the Filter Cart.  Subsequent access to data is restricted by User Permission or Privilege; however Filter Cart use is not.

  • The email address of the Study Owner, which may be used to contact the Investigators involved in the NDA Study and/or the associated publication.

  • The term 'Private' generally means not available to others; however, there are some slightly different meanings based on what is Private.  The default state for an NDA Collection, NDA Study, Supporting Documentation, and data is Private and, therefore, accessible only to those users with appropriate Privileges so it will not be viewable and searchable publicly.  A Collection may be Shared while the data and Supporting Documentation remain Private. 

  • Allows a user with appropriate Privileges to Share the NDA Study.  If required information is missing, the Study will not be shared and a warning message wiill appear to provide direction.

  • 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.

  • Directs the user to video tutorials in another browser tab.

  • The Study ID number is a unique three digit number routinely expressed as S### that is assigned by the NDA.

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NDA Study - View Cohort

The View Cohort shows the Study cohort characteristics which will includes the name, type, sex and age in months range criteria.  Note that age and sex restrict the data that can be added to the cohort.  Medical criteria and phenotype are also included.  Of particular importance on this page are any comments related to included subjects, which may be different than published results, often attributed to data sharing consent.    

Frequently Asked Questions

  • The appropriate Medical Criteria, Phenotype, and Sub Type defined by the Study Owner are highlighted.  The option trees are automatically expanded so the highlighted options are immediately viewable.

Glossary

  • Age is expressed in months from 0 (birth) to 1200 (100 years old).

  • Summarizes the characteristics of a group of research subjects.  The subject count is noted in parentheses.

  • Comments further characterize the cohort beyond the options provided in the interface to define the cohort.

  • A user defined name for the cohort with a 200 character limit.

  • The Cohort Subjects provides the number of unique subjects for whom data have been associated with the cohort.

  • Cohort Type options include Baseline, Control, and Test.

  • NDA defines Medical Criteria as a diagnostically based determination of an individual's disease or condition.

  • NDA defines Phenotype as any physical, morphologic, or biochemical characteristics that are observable in an individual.

  • NDA defines Sub Type as a subordinate condition or disease that further characterizes an individual.

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NDA Study - Summary Tab

An NDA Study describes an analysis, pipeline result, or curated data release - including the cohorts, measures, and methods - referencing the underlying source data in the NDA.  Once the data is referenced and the study is shared, the underlying data will not change.  It will be immutable allowing others to access those data without change into near perpetuity.  Only the assessments (i.e. typically rows in a database) and outcome measures (i.e. columns in a database) included in the study are shared. By sharing data this way (e.g. specific outcome measures by subject/timepoint) an ongoing project's other unpublished data - typically other research aims - will remain embargoed according to a project's established data sharing schedule (see collection).  

When a study is created, a Digital Object Identifier (DOI) is reserved by the NDA, but will not be active. Once the study is shared, the DOI will then be issued and if associated with a publication, the NDA DOI will be linked to the pubication's DOI.   

Frequently Asked Questions

  • The individual listed as an Investigator on the General tab of the NDA Collection and any individuals defined as administrators can be provided this privilege.  When the study is shared, all of those that have approved access to the data are given read-only access.  

Glossary

  • The Abstract of the publication or other public disclosure of analysis results.  The publication abstract is automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection.  The field is editable.

  • The Analysis Study Type is primarily used to share a pipeline; however, it could be used to share a statistical analysis or method.   

  • A Clinical Trial Study is a finding specific to a clinical trial.

  • Summarizes the characteristics of a group of research subjects.  The subject count is noted in parentheses.

  • Summarizes the Data Analysis methods used.

  • Identifies the NDA Study as a Primary Analysis or Secondary Analysis.

  • 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.

  • A persistent and unique identifier that is issued for each NDA Study that may increase the visibility of a researcher's work. Authors are expected to reference the location of data in the publication using the DOI. 

  • Provides links to additional documentation to help explain the NDA Study.

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

  • The Edit Button allows a user to modify or add information once authenticated and if the user has appropriate permissions.

  • The Finding Study Type associates data to a publication or some type of result.   

  • The authors of the publication or other public disclosure of analysis results.  The publication's authors are automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection.  The field is editable and uses a last name, first name format with multiple names separated by semicolons.

  • The NDA user, who does not necessarily have to be one of the Investigators listed in the NDA Study, primarily involved in creating the NDA Study who is serving as the point of contact. The NDA user who creates the NDA Study is automatically assigned as the Study Owner.

  • 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.

  • Primary Analysis is one of the Data Use types NDA recongizes for NDA Studies. It indicates that the NDA Study's creator was involved in the collection of the data (in whole or in part) used in the NDA Study. In other words, at least some and potentially all of the data used was originally collected by the creator of the NDA Study. A Primary Analysis Study.

  • The term 'Private' generally means not available to others; however, there are some slightly different meanings based on what is Private.  The default state for an NDA Collection, NDA Study, Supporting Documentation, and data is Private and, therefore, accessible only to those users with appropriate Privileges so it will not be viewable and searchable publicly.  A Collection may be Shared while the data and Supporting Documentation remain Private. 

  • A static, curated data set.

  • Provides a link to the publication or other public disclosure of analysis results defined in the NDA Study.

  • The Return Button brings the user back to the Data from Papers page.

  • Secondary Analysis is one of the Data Use types NDA recognizes for NDA Studies. It indicates that the NDA Study's creator was not involved in the collection of the data (in whole or in part) used in the NDA Study, but was involved in the analysis of those data. In other words, none of the data used was originally collected by the creator of the NDA Study. A Secondary Analysis Study will provide an Attribution Report listing the Collections and the researchers responsibile for collecting and depositing the original data.

  • Sex is defined at birth and can only be Male or Female.  In some places in the NDA, we incorrectly used the data_element name of Gender.  Users are encouraged to review definitions and not make assumptions based upon a data element name.  

  • The Study ID number is a unique three digit number routinely expressed as S### that is assigned by the NDA.

  • The Study State indicates indicates whether the Study is viewable, searchable, and if the associated data can be accessed by users with appropriate data access Permissions.  The default Study State is Private, which means that only the Collection Owner and users with Read Only Privileges.  Only the Study Owner can Share the Study.

  • The Study Title is generally the title of the publication or other public disclosure of analysis results.  The publication title is automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection.  The field is editable.

  • The NDA Study Type can be either Analysis (i.e. often associated with a computational pipeline), Clinical Trial, Finding (i.e. a result associated with a publication, or Release (i.e. a dataset release, often annually) to indicate the type of work defined in the NDA Study.  Studies. once shared do not change.  

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NDA Study - Cohorts Tab

The Cohort Tab allows users to create one or more cohorts for the NDA Study by identifying general cohort characteristics (such as sex, age in months, and phenotype by medical criteria, phenotype, and sub type) and by specifying subject GUIDs for each cohort.  To add subjects to a cohort, query and add subjects to your filter cart.  Then, navigate to your filter cart in the top right of the website, above the profile page.  Within the filter cart, select 'Create Data Package/Add to Data Study' and assign the subjects to a cohort.  Note that on assignment, the NDA will not associate subject/ages that do not meet age and sex criteria defined for the cohort.  Nor will it be possible to add the same subject/ages to more than one cohort.  

If you have subjects that were excluded from analysis (consent for sharing removed or did not complete the study), they may be specified as excluded to indicate that they were excluded from any analysis.   

Frequently Asked Questions

  • While the NDA Study is in a Private State, you can return to update and edit the information. Once shared, you are no longer able to change the study.  To have it unshared, contact the NDA helpdesk.  

  • Some subjects may not have consented for data sharing so it is not necessarily true that all data from all subjects is available through the NDA Study.  If some data or subjects are missing, note this in the Comments section of the cohort definition.  Additionally, the NDA provides subjects that are excluded from the analysis for whatever reason (e.g. different aim, dropped out of the study, etc.). The reason for exclusion of subjects should be made in the comments section.  

Glossary

  • Age is expressed in months from 0 (birth) to 1200 (100 years old).

  • Summarizes the characteristics of a group of research subjects.  The subject count is noted in parentheses.

  • The user can choose to edit or delete the associated cohort by clicking the Cohort Actions Button.

  • Comments further characterize the cohort beyond the options provided in the interface to define the cohort.

  • A user defined name for the cohort with a 200 character limit.

  • The Cohort Subjects provides the number of unique subjects for whom data have been associated with the cohort.

  • Cohort Type options include Baseline, Control, and Test.

  • Sex is defined at birth and can only be Male or Female.  In some places in the NDA, we incorrectly used the data_element name of Gender.  Users are encouraged to review definitions and not make assumptions based upon a data element name.  

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Frequently Asked Questions

Glossary

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NDA Study - General Tab

An NDA Study describes an analysis (along with the cohorts, measures, and methods of an analysis) and references the underlying source data from a Collection(s) so others can access both the data specific to a publication, a finding, an analysis, or a data release. A study references data shared within the NDA by specific outcome measures and subject/timepoint.  When data are referenced in this way the underlying data will not change.  It will be immutable, allowing the data supporting a finding, analysis pipeline or release, to be made available to others, in near pertuity.  

A Digital Object Identifier (DOI) is issued for each NDA Study.  The DOI is initially reserved at time of creation, and issued and linked to the study when shared.  If associated with a publication, the NDA DOI will reference the publication DOI.  However, authors are encouraged to reference the NDA DOI within their publication.  

The General Tab should be completed and the Save Button should be clicked before moving to other tabs in the NDA Study. The NDA Study State default is to be visible only to the study owner and any others assigned access through the permissions interface.  Once shared, the study and its associated data are made available to qualified users, who have applied for access through an NDA data use agreement.      

Frequently Asked Questions

  • The list of Collections from which data were used in creating the NDA Study will be provided if the study is defined as Secondary Analysis.  

  • The DOI for the NDA Study is expected to be included in the Acknowledgements of a paper (or public disclosure of results) according to the terms in the NDA Data Submission Agreement or NDA Data Use Certification for users using NDA shared data.

  • A DOI is automatically issued when an NDA Study is first created and saved.  However, the DOI will not become active until the NDA Study is shared.  

Glossary

  • The Abstract of the publication or other public disclosure of analysis results.  The publication abstract is automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection.  The field is editable.

  • The Analysis Study Type is primarily used to share a pipeline; however, it could be used to share a statistical analysis or method.   

  • A Clinical Trial Study is a finding specific to a clinical trial.

  • Identifies the NDA Study as a Primary Analysis or Secondary Analysis.

  • A persistent and unique identifier that is issued for each NDA Study that may increase the visibility of a researcher's work. Authors are expected to reference the location of data in the publication using the DOI. 

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

  • The Edit Button allows a user to modify or add information once authenticated and if the user has appropriate permissions.

  • Viewable at the top right of NDA pages, the Filter Cart is a temporary holder of data identified by the user through querying or browsing as being of some potential interest. The Filter Cart adds data using an AND condition. The opportunity to further refine data to determine what will be downloaded or sent to a miNDAR is available on the Data Packaging Page, the next step after the Filter Cart.  Subsequent access to data is restricted by User Permission or Privilege; however Filter Cart use is not.

  • The Finding Study Type associates data to a publication or some type of result.   

  • The grant number(s) associated with a Collection(s) from which data are included in the NDA Study.  Grant numbers are automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection.  The field is editable.

  • The authors of the publication or other public disclosure of analysis results.  The publication's authors are automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection.  The field is editable and uses a last name, first name format with multiple names separated by semicolons.

  • Keywords that help identify concepts, ideas, or topics may be entered and separated by semicolons.

  • The NDA user, who does not necessarily have to be one of the Investigators listed in the NDA Study, primarily involved in creating the NDA Study who is serving as the point of contact. The NDA user who creates the NDA Study is automatically assigned as the Study Owner.

  • The email address of the Study Owner, which may be used to contact the Investigators involved in the NDA Study and/or the associated publication.

  • Primary Analysis is one of the Data Use types NDA recongizes for NDA Studies. It indicates that the NDA Study's creator was involved in the collection of the data (in whole or in part) used in the NDA Study. In other words, at least some and potentially all of the data used was originally collected by the creator of the NDA Study. A Primary Analysis Study.

  • The name of the lead investigator of the analysis using a last name, first name format.  The field is editable.

  • 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.

  • A static, curated data set.

  • The publication's PubMed ID is automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection.  This editable field is not required if a publication is not recorded in PubMed. 

  • The Return Button brings the user back to the Data from Papers page.

  • Allows a user with appropriate Privileges to Share the NDA Study.  If required information is missing, the Study will not be shared and a warning message wiill appear to provide direction.

  • 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.

  • The Study ID number is a unique three digit number routinely expressed as S### that is assigned by the NDA.

  • The Study Title is generally the title of the publication or other public disclosure of analysis results.  The publication title is automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection.  The field is editable.

  • The NDA Study Type can be either Analysis (i.e. often associated with a computational pipeline), Clinical Trial, Finding (i.e. a result associated with a publication, or Release (i.e. a dataset release, often annually) to indicate the type of work defined in the NDA Study.  Studies. once shared do not change.  

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NDA Study - Measures Tab

Measures are added to an NDA Study by selecting the filter cart by selecting the download/add to study link within your filter cart and then selecting the "Assign to Cohort" link.  You will then be promted with the available cohorts from any NDA studies in which you have access and are not yet shared. All measures selected on the filter cart will also be added.  Note that only subjects/ages that meet the cohort's criteria will be added.  Also, the NDA will not allow the same subject/age to be added to two different cohorts within a study.  

Once assigned,  you can view the subjects/ages added to the study and remove those subjects/ages that should not be included by selecting the action Edit Subjects.  Lastly, a designation on the type of outcome measure is needed (e.g. primary or secondary) and the specific outcome measures will be displayed in edit subject if you choose specific data elements, which is preferred.  

Frequently Asked Questions

  • Defining the Data Elements and whether they are used as a Primary or Secondary outcome helps to further characterize the data used in the analysis. Furthermore, when you select Edit Measure at the Data Element level you will see and can further define the subject/age records specific to that measure and cohort.  

Glossary

  • When clicked, changes the Types of Outcome for all listed Data Structures and Data Elements to Primary.

  • When clicked, changes the Types of Outcome for all listed Data Structures and Data Elements to Secondary.

  • The NDA Data Dictionary provides an electronic definition for each measure, questionnaire, assessment, etc that can be accepted into the NDA.

  • Intended to be re-used as much as possible to honor harmonization standards, a Data Element is an individual item (variable/field) within a Data Structure that represents a question/field on an assessment or a discrete data point.

  • 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 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. 

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NDA Study - Measures Tab

As defined by the Study Owner, the Measures Tab lists the Data Structures from the NDA Data Dictionary used in the Study and whether they are  Primary or Secondary measures.  The NDA supports individual data structures, which would be an entire assessment (e.g. Mullen Scales of Early Learning) or individual data elements, which are preferred.  To view the actual data definition for the defined Data Structure, click on the Measure name and the definition will open in another browser tab.  For data elements, clicking on the 'i' informational icon, a popup of the description, value range, and any notes will be provided.  Those that are authenticated may view the actual data in tabular form, supporting the cohort of the study.  

Frequently Asked Questions

  • Defining the Data Elements and whether they are used as a Primary or Secondary outcome helps to further characterize the data used in the analysis. Furthermore, when you select Edit Measure at the Data Element level you will see and can further define the subject/age records specific to that measure and cohort.  

Glossary

  • The Analysis Study Type is primarily used to share a pipeline; however, it could be used to share a statistical analysis or method.   

  • A Clinical Trial Study is a finding specific to a clinical trial.

  • The NDA Data Dictionary provides an electronic definition for each measure, questionnaire, assessment, etc that can be accepted into the NDA.

  • Intended to be re-used as much as possible to honor harmonization standards, a Data Element is an individual item (variable/field) within a Data Structure that represents a question/field on an assessment or a discrete data point.

  • 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

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

  • The Edit Button allows a user to modify or add information once authenticated and if the user has appropriate permissions.

  • The Finding Study Type associates data to a publication or some type of result.   

  • Summarizes the count of Primary and Secondary Measures (data structures) used in the NDA Study's analysis.

  • Defines whether the Data Structure or Data Element is considered Primary or Secondary in the analysis.

  • Defines the number of subjects who data was used in the analysis for the identified measure (Data Structure or Data Element).

  • The NDA user, who does not necessarily have to be one of the Investigators listed in the NDA Study, primarily involved in creating the NDA Study who is serving as the point of contact. The NDA user who creates the NDA Study is automatically assigned as the Study Owner.

  • A static, curated data set.

  • The Return Button brings the user back to the Data from Papers page.

  • The Study ID number is a unique three digit number routinely expressed as S### that is assigned by the NDA.

  • The Study State indicates indicates whether the Study is viewable, searchable, and if the associated data can be accessed by users with appropriate data access Permissions.  The default Study State is Private, which means that only the Collection Owner and users with Read Only Privileges.  Only the Study Owner can Share the Study.

  • The Study Title is generally the title of the publication or other public disclosure of analysis results.  The publication title is automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection.  The field is editable.

  • The NDA Study Type can be either Analysis (i.e. often associated with a computational pipeline), Clinical Trial, Finding (i.e. a result associated with a publication, or Release (i.e. a dataset release, often annually) to indicate the type of work defined in the NDA Study.  Studies. once shared do not change.  

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NDA Study - Permissions Tab

The Permissions Tab is used to manage NDA Study Privileges prior to the study being shared making it possible for reviewers of the study to access and even download the data from a study. The NDA Study Owner and users with an Administrative Privilege for the NDA Study may assign and view user Privileges on this tab by searching for a username or email address.  

Frequently Asked Questions

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. 

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

  • Viewable at the top right of NDA pages, the Filter Cart is a temporary holder of data identified by the user through querying or browsing as being of some potential interest. The Filter Cart adds data using an AND condition. The opportunity to further refine data to determine what will be downloaded or sent to a miNDAR is available on the Data Packaging Page, the next step after the Filter Cart.  Subsequent access to data is restricted by User Permission or Privilege; however Filter Cart use is not.

Contact NDA Help Desk

NDA Help Center

NDA Study - Data Analysis Tab

Users can provide information on the type of data analysis used.  Pre-populated options have been provided; however, additional options can be added by clicking the Add New button.

Frequently Asked Questions

  • If you did not use genomic or imaging data in the paper described in the NDA Study, you will not be expected to mark any items in the Genotyping/NGS, Microarray/Protein Analysis, or Neuro Signal Recordings boxes.

  • Users should indicate the appropriate information in the appropriate box without marking in multiple boxes.

Glossary

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

  • Viewable at the top right of NDA pages, the Filter Cart is a temporary holder of data identified by the user through querying or browsing as being of some potential interest. The Filter Cart adds data using an AND condition. The opportunity to further refine data to determine what will be downloaded or sent to a miNDAR is available on the Data Packaging Page, the next step after the Filter Cart.  Subsequent access to data is restricted by User Permission or Privilege; however Filter Cart use is not.

  • The NDA user, who does not necessarily have to be one of the Investigators listed in the NDA Study, primarily involved in creating the NDA Study who is serving as the point of contact. The NDA user who creates the NDA Study is automatically assigned as the Study Owner.

  • The email address of the Study Owner, which may be used to contact the Investigators involved in the NDA Study and/or the associated publication.

  • The term 'Private' generally means not available to others; however, there are some slightly different meanings based on what is Private.  The default state for an NDA Collection, NDA Study, Supporting Documentation, and data is Private and, therefore, accessible only to those users with appropriate Privileges so it will not be viewable and searchable publicly.  A Collection may be Shared while the data and Supporting Documentation remain Private. 

  • Allows a user with appropriate Privileges to Share the NDA Study.  If required information is missing, the Study will not be shared and a warning message wiill appear to provide direction.

  • 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.

  • Directs the user to video tutorials in another browser tab.

  • The Study ID number is a unique three digit number routinely expressed as S### that is assigned by the NDA.

  • The Study State indicates indicates whether the Study is viewable, searchable, and if the associated data can be accessed by users with appropriate data access Permissions.  The default Study State is Private, which means that only the Collection Owner and users with Read Only Privileges.  Only the Study Owner can Share the Study.

  • The Study Title is generally the title of the publication or other public disclosure of analysis results.  The publication title is automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection.  The field is editable.

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NDA Study - Types Tab

The Arms/Comparison, Description, and Intervention Type options defined by the NDA Study Owner for either an Observational Study or Controlled Study can be viewed on this tab and are highlighted in yellow.  The NDA allows those that define a Study to define their own arms, descriptions or intervention types as needed, however, to support harmonization, these must first be approved by the NDA prior to sharing the study.  

Frequently Asked Questions

  • The appropriate Arms/Comparison, Description, and Intervention information is highlighted based on whether the Study Owner identified the Study Type as Observational or Controlled.  The option trees are automatically expanded so the highlighted options are immediately viewable and there is no need to expand all items to check for highlighted options.

Glossary

  • The Analysis Study Type is primarily used to share a pipeline; however, it could be used to share a statistical analysis or method.   

  • A Clinical Trial Study is a finding specific to a clinical trial.

  • The Edit Button allows a user to modify or add information once authenticated and if the user has appropriate permissions.

  • The Finding Study Type associates data to a publication or some type of result.   

  • The NDA user, who does not necessarily have to be one of the Investigators listed in the NDA Study, primarily involved in creating the NDA Study who is serving as the point of contact. The NDA user who creates the NDA Study is automatically assigned as the Study Owner.

  • The email address of the Study Owner, which may be used to contact the Investigators involved in the NDA Study and/or the associated publication.

  • The term 'Private' generally means not available to others; however, there are some slightly different meanings based on what is Private.  The default state for an NDA Collection, NDA Study, Supporting Documentation, and data is Private and, therefore, accessible only to those users with appropriate Privileges so it will not be viewable and searchable publicly.  A Collection may be Shared while the data and Supporting Documentation remain Private. 

  • A static, curated data set.

  • The Return Button brings the user back to the Data from Papers page.

  • 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.

  • The Study ID number is a unique three digit number routinely expressed as S### that is assigned by the NDA.

  • The Study State indicates indicates whether the Study is viewable, searchable, and if the associated data can be accessed by users with appropriate data access Permissions.  The default Study State is Private, which means that only the Collection Owner and users with Read Only Privileges.  Only the Study Owner can Share the Study.

  • The Study Title is generally the title of the publication or other public disclosure of analysis results.  The publication title is automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection.  The field is editable.

  • The NDA Study Type can be either Analysis (i.e. often associated with a computational pipeline), Clinical Trial, Finding (i.e. a result associated with a publication, or Release (i.e. a dataset release, often annually) to indicate the type of work defined in the NDA Study.  Studies. once shared do not change.  

Contact NDA Help Desk

NDA Help Center

NDA Study - Add Cohort

The Add Cohort interface allows you to add a cohort.  Multiple cohorts can be built to identify a baseline, control, or test cohort.  Sex and Age Range are specified, which will restrict the data that can be assigned to the cohort.     

 

Frequently Asked Questions

  • While the NDA Study is in a Private State, you can return to update and edit the information. Once shared, you are no longer able to change the study.  To have it unshared, contact the NDA helpdesk.  

Glossary

  • Age is expressed in months from 0 (birth) to 1200 (100 years old).

  • The Assigned Subjects tab allows the user to add subjects to or exclude subjects from a cohort based on the subject's GUID. 

  • Summarizes the characteristics of a group of research subjects.  The subject count is noted in parentheses.

  • The user can choose to edit or delete the associated cohort by clicking the Cohort Actions Button.

  • Comments further characterize the cohort beyond the options provided in the interface to define the cohort.

  • A user defined name for the cohort with a 200 character limit.

  • The Cohort Subjects provides the number of unique subjects for whom data have been associated with the cohort.

  • Cohort Type options include Baseline, Control, and Test.

  • A subject ID allowing researchers to share data specific to a study participant without exposing personally identifiable information (PII) and match participants across labs and research data repositories. GUIDs are required for all submitted data and are created using the GUID Tool which can be requested through an NDA account. GUIDs are based on basic information typically found on a birth certificate (first name, last name, date of birth, sex at birth and city/municipality of birth) and can be generated either individually or through a batch process using the template available in the GUID Tool.

  • GUIDs already added to the Included Subjects box can be excluded by clicking on the GUIDs to Exclude Button.  The GUIDs that appear in the Enter GUIDs to Exclude pop up will be excluded unless the user removes them from the list by deleting them.

  • The GUIDs to Include Button opens another interface into which the user can type a list of GUIDs or paste a list of GUIDs.  The Cohort must first be created and saved before any GUIDs can be added.

  • GUIDs can be moved between the Included and Excluded panes by using the arrows between the two panes.  The single arrow pointing to the right willmove a GUID from Included to Excluded while a single arrow pointing to the right with a line next to the point whill move all GUIDs from Included to Excluded.  The single arrow pointing to the left willmove a GUID from Excluded to Included while a single arrow pointing to the left with a line next to the point whill move all GUIDs from Excluded to Included.

  • NDA defines Medical Criteria as a diagnostically based determination of an individual's disease or condition.

  • NDA defines Phenotype as any physical, morphologic, or biochemical characteristics that are observable in an individual.

  • A tab in Add/Edit Cohort that allows for the cohort to be characterized according to Medical Condition, Phenotype, and/or Sub Type.

  • The term 'Private' generally means not available to others; however, there are some slightly different meanings based on what is Private.  The default state for an NDA Collection, NDA Study, Supporting Documentation, and data is Private and, therefore, accessible only to those users with appropriate Privileges so it will not be viewable and searchable publicly.  A Collection may be Shared while the data and Supporting Documentation remain Private. 

  • Initially, data from the subject was submitted using a pseudoGUID since the information needed to create a valid GUID was not available; however, that information has since become available and a valid GUID has been created. All data previously submitted under the pseudoGUID will be updated to be searchable by the promoted GUID - the now valid GUID.

  • An NDA Tool and process used to check for multiple identifiers for a subject for whom data have been submitted to the NDA and allow for the multiple identifiers to be consolidated into one identifier.

  • Sex is defined at birth and can only be Male or Female.  In some places in the NDA, we incorrectly used the data_element name of Gender.  Users are encouraged to review definitions and not make assumptions based upon a data element name.  

  • 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 defines Sub Type as a subordinate condition or disease that further characterizes an individual.

Contact NDA Help Desk

NDA Help Center

NDA Study - Cohorts Tab

The Cohort Tab allows users to view the cohorts for the NDA Study that were defined by the Study Owner.  Cohorts identify general cohort characteristics (such as sex, age in months, and phenotype by medical criteria, phenotype, and sub type).  Once a cohort is defined by the collection owner, subject data are then added through the NDA filter cart, but only subjects that meet the cohort's criteria  (e.g. age restrictions and sex ).  Note too that a subject/age can exist only in one cohort.   

Frequently Asked Questions

  • Some subjects may not have consented for data sharing so it is not necessarily true that all data from all subjects is available through the NDA Study.  If some data or subjects are missing, note this in the Comments section of the cohort definition.  Additionally, the NDA provides subjects that are excluded from the analysis for whatever reason (e.g. different aim, dropped out of the study, etc.). The reason for exclusion of subjects should be made in the comments section.  

Glossary

  • Age is expressed in months from 0 (birth) to 1200 (100 years old).

  • The Analysis Study Type is primarily used to share a pipeline; however, it could be used to share a statistical analysis or method.   

  • A Clinical Trial Study is a finding specific to a clinical trial.

  • Summarizes the characteristics of a group of research subjects.  The subject count is noted in parentheses.

  • Comments further characterize the cohort beyond the options provided in the interface to define the cohort.

  • A user defined name for the cohort with a 200 character limit.

  • The Cohort Subjects provides the number of unique subjects for whom data have been associated with the cohort.

  • Cohort Type options include Baseline, Control, and Test.

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

  • The Edit Button allows a user to modify or add information once authenticated and if the user has appropriate permissions.

  • The Finding Study Type associates data to a publication or some type of result.   

  • The email address of the Study Owner, which may be used to contact the Investigators involved in the NDA Study and/or the associated publication.

  • The term 'Private' generally means not available to others; however, there are some slightly different meanings based on what is Private.  The default state for an NDA Collection, NDA Study, Supporting Documentation, and data is Private and, therefore, accessible only to those users with appropriate Privileges so it will not be viewable and searchable publicly.  A Collection may be Shared while the data and Supporting Documentation remain Private. 

  • A static, curated data set.

  • The Return Button brings the user back to the Data from Papers page.

  • Sex is defined at birth and can only be Male or Female.  In some places in the NDA, we incorrectly used the data_element name of Gender.  Users are encouraged to review definitions and not make assumptions based upon a data element name.  

  • The Study Title is generally the title of the publication or other public disclosure of analysis results.  The publication title is automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection.  The field is editable.

Contact NDA Help Desk

NDA Help Center

Frequently Asked Questions

Glossary

Contact NDA Help Desk

NDA Help Center

Frequently Asked Questions

Glossary

Contact NDA Help Desk

NDA Help Center

NDA Study - Data Analysis Tab

The Data Analysis Tab provides information on the type(s) of data analysis used in the NDA Study as defined by the Study Owner.  The NDA allows those that define a Study to include their own data analysis methods as needed, however, to support harmonization, these must first be approved by the NDA prior to sharing the study.   Additionally, files and links to other websites are also supported here as those documents generally, but not necessarily, relate to data analysis methods.

Frequently Asked Questions

  • The appropriate Genotyping/NGS, Microarray/Protein Analysis, Neuro Signal Recordings, and Statistical options used by the researcher are highlighted in yellow.  The option trees are automatically expanded so the highlighted options are immediately viewable so there is no need to expand all items to check for highlighted options.

Glossary

  • The Analysis Study Type is primarily used to share a pipeline; however, it could be used to share a statistical analysis or method.   

  • A Clinical Trial Study is a finding specific to a clinical trial.

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

  • The Edit Button allows a user to modify or add information once authenticated and if the user has appropriate permissions.

  • The Finding Study Type associates data to a publication or some type of result.   

  • The NDA user, who does not necessarily have to be one of the Investigators listed in the NDA Study, primarily involved in creating the NDA Study who is serving as the point of contact. The NDA user who creates the NDA Study is automatically assigned as the Study Owner.

  • The email address of the Study Owner, which may be used to contact the Investigators involved in the NDA Study and/or the associated publication.

  • The term 'Private' generally means not available to others; however, there are some slightly different meanings based on what is Private.  The default state for an NDA Collection, NDA Study, Supporting Documentation, and data is Private and, therefore, accessible only to those users with appropriate Privileges so it will not be viewable and searchable publicly.  A Collection may be Shared while the data and Supporting Documentation remain Private. 

  • A static, curated data set.

  • The Return Button brings the user back to the Data from Papers page.

  • 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.

  • The Study ID number is a unique three digit number routinely expressed as S### that is assigned by the NDA.

  • The Study State indicates indicates whether the Study is viewable, searchable, and if the associated data can be accessed by users with appropriate data access Permissions.  The default Study State is Private, which means that only the Collection Owner and users with Read Only Privileges.  Only the Study Owner can Share the Study.

  • The Study Title is generally the title of the publication or other public disclosure of analysis results.  The publication title is automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection.  The field is editable.

  • The NDA Study Type can be either Analysis (i.e. often associated with a computational pipeline), Clinical Trial, Finding (i.e. a result associated with a publication, or Release (i.e. a dataset release, often annually) to indicate the type of work defined in the NDA Study.  Studies. once shared do not change.  

Contact NDA Help Desk

NDA Help Center

NDA Study - Results Tab

The NDA Study Results Tab allows for files (e.g., presentations, unpublished papers, white papers, etc) to be uploaded and URLs for a paper, presentation or other public disclosure of results available online to be provided.  Files can be designated as available to either Qualified Researchers, which requires authentication and approved access to view, or the General Public.  Content in this tab is viewable by the NDA Study Owner as well as users with Read Only Privileges for the NDA Study until the Study is Shared.  When shared, the results file and links will appear on the summary tab.  

 

Frequently Asked Questions

  • A limit is not in place; however, users are cautioned to provide only relevant information.

  • A file available to the General Public means that anyone can access the file regardless of whether they are approved to access data in the NDA and regardless of whether they even have an NDA account.  Qualified Researchers means that the data is only available to those with approved access to a shared data within the NDA.  

Glossary

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

  • Viewable at the top right of NDA pages, the Filter Cart is a temporary holder of data identified by the user through querying or browsing as being of some potential interest. The Filter Cart adds data using an AND condition. The opportunity to further refine data to determine what will be downloaded or sent to a miNDAR is available on the Data Packaging Page, the next step after the Filter Cart.  Subsequent access to data is restricted by User Permission or Privilege; however Filter Cart use is not.

  • The email address of the Study Owner, which may be used to contact the Investigators involved in the NDA Study and/or the associated publication.

  • The term 'Private' generally means not available to others; however, there are some slightly different meanings based on what is Private.  The default state for an NDA Collection, NDA Study, Supporting Documentation, and data is Private and, therefore, accessible only to those users with appropriate Privileges so it will not be viewable and searchable publicly.  A Collection may be Shared while the data and Supporting Documentation remain Private. 

  • A Privilege provided to a user so that an NDA Study can be viewed while in a Private State without the ability to edit the Study.

  • Allows a user with appropriate Privileges to Share the NDA Study.  If required information is missing, the Study will not be shared and a warning message wiill appear to provide direction.

Contact NDA Help Desk

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NDA Help Center

Filter Cart

Viewable at the top right of NDA pages, the Filter Cart is a temporary holder for filters and data they select. Filters are added to the Workspace first, before being submitted to The Filter Cart. Data selected by filters in the Filter Cart can be added to a Data Package or an NDA Study from the Data Packaging Page, by clicking the 'Create Data Package / Add Data to Study' button.

The filter cart supports combining multiple filters together, and depending on filter type will use "AND" or "OR" when combining filters.

Multiple selections from the same filter type will result in those selections being applied with an ‘OR’ condition. For example, if you add an NDA Collection Filter with selections for both collections 2112 and 2563 to an empty Workspace, the subjects from NDA Collection 2112 ‘OR’ NDA Collection 2563 will be added to your Workspace even if a subject is in both NDA Collections. You can then add other NDA Collections to your Workspace which further extends the ‘OR’ condition.

If a different filter type is added to your Workspace, or a filter has already been submitted to the Filter Cart, the operation then performs a logical ‘AND’ operation. This means that given the subjects returned from the first filter, only those subjects that matched the first filter are returned by the second filter (i.e., subjects that satisfied both filters).

When combining other filters with the GUID filter, please note the GUID filter should be added last. Otherwise, preselected data may be lost. For example, a predefined filter from Featured Datasets may select a subset of data available for a subject. When combined with a GUID filter for the same subject, the filter cart will contain all data available from that subject, data structure, and dataset; this may be more data than was selected in the predefined filter for that subject. Again, you should add the GUID Filter as the last filter to your cart. This ensures 'AND' logic between filters and will limit results to the subjects, data structures, and datasets already included in your filter cart.

Note that only the subjects specific to your filter will be added to your Filter Cart and only on data shared with the research community. Other data for those same subjects may exist (i.e., within another NDA Collection, associated with a data structure that was not requested in the query, etc.). So, users should select ‘Find all Subjects Data’ to identify all data for those specific subjects.

Additional Tips:

  • You may query the data without an account, but to gain access you will need to create an NDA user account and apply for access. Most data access requires that you or your lab are sponsored by an NIH recognized institution with Federal Wide Assurance (FWA). Without access, you will not be able to obtain individual-level data.

Once you have selected data of interest you can:

  • Create a data package - This allows you to specify format for access/download
  • Assign to Study Cohort - Associate the data to an NDA Study allowing for a DOI to be generated and the data to be linked directly to a finding, publication, or data release.
  • Find All Subject Data - Depending on filter types being used, not all data associated with a subject will be selected. Data may be restricted by data structure, NDA Collection, or outcome variables (e.g., NDA Study). ‘Find All Data’ expands the filter criteria by replacing all filters in your Filter Cart with a single Query by GUID filter for all subjects selected by those filters.

Please Note:

  • When running a query, it may take a moment to populate the Filter Cart. Queries happen in the background so you can define other queries during this time.
  • When you add your first filter, all data associated with your query will be added to the Filter Cart (e.g., a Concept, an NDA Collection, a Data Structure/Element, etc.). As you add additional filters, they will also display in the Filter Cart. Only the name of filter will be shown in the Filter Cart, not the underlying structures.
  • Information about the contents of the Filter Cart can be seen by clicking "Edit”.
  • Once your results appear in the Filter Cart, you can create a data package or assign subjects to a study by selecting the 'Package/Assign to Study' option. You can also 'Edit' or 'Clear' filters.

Frequently Asked Questions

  • What is a Filter Cart?
    Viewable at the top right of NDA pages, the Filter Cart is a temporary holder of data identified by the user, through querying or browsing, as being of some potential interest. The Filter Cart is where you send the data from your Workspace after it has been filtered.
  • What do I do after filters are added to the Filter Cart?
    After filters are added to the Filter Cart, users have options to ‘Create a Package’ for download, ‘Associate to Study Cohort’, or ‘Find All Subject Data’. Selecting ‘Find All Subject Data’ identifies and pulls all data for the subjects into the Filter Cart. Choosing ‘Create a Package’ allows users to package and name their query information for download. Choosing ‘Associate to Study Cohort’ gives users the opportunity to choose the Study Cohort they wish to associate this data.
  • Are there limitations on the amount of data a user can download?

    NDA limits the rate at which individual users can transfer data out of Amazon Web Services (AWS) S3 Object storage to non-AWS internet addresses. All users have a download limit of 20 Terabytes. This limit applies to the volume of data an individual user can transfer within a 30-day window. Only downloads to non-AWS internet addresses will be counted against the limit.

  • How does Filter Cart Boolean logic work?

    The Filter Cart currently employs basic AND/OR Boolean logic. A single filter may contain multiple selections for that filter type, e.g., a single NDA Study filter might contain NDA Study 1 and NDA Study 2. A subject that is in EITHER 1 OR 2 will be returned. Adding multiple filters to the cart, regardless of type, will AND the result of each filter. If NDA Study 1 and NDA Study 2 are added as individual filters, data for a subject will only be selected if the subject is included in BOTH 1 AND 2.

    When combining other filters with the GUID filter, please note the GUID filter should be added last. Otherwise, preselected data may be lost. For example, a predefined filter from Featured Datasets may select a subset of data available for a subject. When combined with a GUID filter for the same subject, the filter cart will contain all data available from that subject, data structure, and dataset; this may be more data than was selected in the predefined filter for that subject. Again, you should add the GUID Filter as the last filter to your cart. This ensures 'AND' logic between filters and will limit results to the subjects, data structures, and datasets already included in your filter cart.

Glossary

  • Workspace
    The Workspace within the General Query Tool is a holding area where you can review your pending filters prior to adding them to Filter Cart. Therefore, the first step in accessing data is to select one or more items and move it into the Workspace.
  • Filter Cart
    Viewable at the top right of NDA pages, the Filter Cart is a temporary holder of data identified by the user through querying or browsing as being of some potential interest. The Filter Cart adds data using an AND condition. The opportunity to further refine data to determine what will be downloaded or sent to a miNDAR is available on the Data Packaging Page, the next step after the Filter Cart. Subsequent access to data is restricted by User Permission or Privilege; however Filter Cart use is not.
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View Cohort
        helpcenter.ndastudy.view-cohort

        NDA Help Center

        NDA Study - View Cohort

        The View Cohort shows the Study cohort characteristics which will includes the name, type, sex and age in months range criteria. Note that age and sex restrict the data that can be added to the cohort. Medical criteria and phenotype are also included. Of particular importance on this page are any comments related to included subjects, which may be different than published results, often attributed to data sharing consent.

        Frequently Asked Questions

        • How do I know the characteristics of the cohort?
          The appropriate Medical Criteria, Phenotype, and Sub Type defined by the Study Owner are highlighted. The option trees are automatically expanded so the highlighted options are immediately viewable.

        Glossary

        • Age Range
          Age is expressed in months from 0 (birth) to 1200 (100 years old).
        • Medical Criteria
          NDA defines Medical Criteria as a diagnostically based determination of an individual's disease or condition.
        • Phenotype
          NDA defines Phenotype as any physical, morphologic, or biochemical characteristics that are observable in an individual.
        • Sub Types
          NDA defines Sub Type as a subordinate condition or disease that further characterizes an individual.
        • Cohort Name
          A user defined name for the cohort with a 200 character limit.
        • Cohort Type
          Cohort Type options include Baseline, Control, and Test.
        • Cohort Comments
          Comments further characterize the cohort beyond the options provided in the interface to define the cohort.
        • Cohort Subjects
          The Cohort Subjects provides the number of unique subjects for whom data have been associated with the cohort.
        • Cohort
          Summarizes the characteristics of a group of research subjects. The subject count is noted in parentheses.
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        Add URL
        Add File
        Select File
        Study DOI
        Study DOI Status Info
        • DOI: 10.15154/1522486
        • OSTI Status: Registered
        • NDAR Status: Registered
        • DOI Registered with DataCite
        Edit Subjects Dialog
        Select Subjects
        Selected
        No records found.
        Melissa Walsh melissajmwalsh@gmail.com Analysis Shared
        Click for more info Melissa J. M. Walsh; Gregory L. Wallace, Stephen M. Gallegos, B. Blair Braden
        Females with autism spectrum disorder (ASD) have been long overlooked in neuroscience research, but emerging evidence suggests they show distinct phenotypic trajectories and age-related brain differences. Sex-related biological factors (e.g., hormones, genes) may play a role in ASD etiology and have been shown to influence neurodevelopmental trajectories. Thus, a lifespan approach is warranted to understand brain-based sex differences in ASD. This systematic review on MRI-based sex differences in ASD was conducted to elucidate variations across the lifespan and inform biomarker discovery of ASD in females. We identified articles through two database searches. Fifty studies met criteria and underwent integrative review. We found that regions expressing replicable sex-by-diagnosis differences across studies overlapped with regions showing sex differences in neurotypical (NT) cohorts, in particular regions showing NT male>female volumes. Furthermore, studies investigating age-related brain differences across a broad age-span suggest distinct neurodevelopmental patterns in females with ASD. Qualitative comparison across youth and adult studies also supported this hypothesis. However, many studies collapsed across age, which may mask differences. Furthermore, accumulating evidence supports the female protective effect in ASD, although only one study examined brain circuits implicated in “protection.” When synthesized with the broader literature, brain-based sex differences in ASD may come from various sources, including genetic and endocrine processes involved in brain “masculinization” and “feminization” across early development, puberty, and other lifespan windows of hormonal transition. Furthermore, sex-related biology may interact with peripheral processes, in particular the stress axis and brain arousal system, to produce distinct neurodevelopmental patterns in males and females with ASD. Future research on neuroimaging-based sex differences in ASD would benefit from a lifespan approach in well-controlled and multivariate studies. Possible relationships between behavior, sex hormones, and brain development in ASD remain largely unexamined.
        10.15154/1522486
        Click for more info Secondary Analysis
        Autism Centers of Excellence (ACE), Clinical Trials for Mental Disorders (CTMD), Dimensional Approaches to Research Classification in Psychiatric Disorders (DARCPD)
        Click for more info
        IDCollectionPermission GroupSubjects
        1999 NIMH Genetics NIMH Data Archive163
        2026 Biomarkers of Developmental Trajectories and Treatment in ASD NIMH Data Archive162
        2004 1/3, 2/3, and 3/3: Sequencing Autism Spectrum Disorder Extended Pedigrees NIMH Data Archive161
        2021 Multimodal Developmental Neurogenetics of Females with ASD NIMH Data Archive79
        2067 Targeting GABA-A for the Treatment of Social Disability in Young Adults with Autism Spectrum Disorders: A Phase II Proof of Mechanism Trial NIMH Data Archive47
        2120 Adapting a Parent Advocacy Program to Improve Transition for Youth With Autism NIMH Data Archive42
        1 UIC ACE: Translational Studies of Insistence on Sameness in Autism NIMH Data Archive40
        2112 Services to enhance social functioning in adults with autism spectrum disorder NIMH Data Archive33
        2778 Heterogeneity in Autism Spectrum Disorders: Biological Mechanisms, Trajectories, and Treatment Response NIMH Data Archive30
        2179 Neural markers of shared gaze during simulated social interactions in ASD \-Modal Automated Assessment of Behavior during Social Interactions in Children with ASD NIMH Data Archive28
        2572 Development of a novel neurotechnology to promote emotion recognition in autism NIMH Data Archive26
        2093 Sporadic Mutations and Autism Spectrum Disorders NIMH Data Archive25
        2024 Divergent biases for conspecifics as early markers for Autism Spectum Disorders NIMH Data Archive23
        2560 Peripersonal Space Representation as a Basis for Social Deficits in Autism and Schizophrenia Spectrum Disorders NIMH Data Archive20
        2421 Optimizing Prediction of Social Deficits in Autism Spectrum Disorders NIMH Data Archive17
        2976 Autism Genetics Phase II: Increasing representation of human diversity NIMH Data Archive13
        2285 Integrity and Dynamic Processing Efficiency of Networks in ASD NIMH Data Archive13
        2122 STEPS: Stepped Transition in Education Program for Students with ASD NIMH Data Archive10
        2312 Multimodel Assessment of Social Process Systems across Neurodevelopmental Disorders NIMH Data Archive9
        3034 Developing an intervention to improve independent functioning and health and reduce victimization risk for adults with autism NIMH Data Archive7
        2358 Neural networks for attention to internal and external sensory cues in ASD NIMH Data Archive6
        2101 Phenotypic Characterization of Gene Disrupting Mutations in ASD NIMH Data Archive5
        1450 The Met Signaling System, Autism and Gastrointestinal Dysfunction. NIMH Data Archive4
        1936 Deep sequencing of autism candidate genes in 2000 families from the Simons Simplex Collection (SSC) NIMH Data Archive3
        2929 Social-communicative deficits in Autism Spectrum Disorder as measured by mGluR5 positron emission tomography NIMH Data Archive3
        2254 The neurobiological basis of heterogeneous social and motor deficits in ASD NIMH Data Archive3
        2286 FMRI and EEG approaches to the resting state in ASD NIMH Data Archive2
        2203 Change-sensitive Measurement of Emotion Dysregulation in ASD NIMH Data Archive2
        2424 Neurobiology of Autism With Macrocephaly NIMH Data Archive2
        2279 Neural Effects of Sustained Oxytocin Treatment in Children with Autism NIMH Data Archive1
        2266 Inhibitory dysfunction in autism NIMH Data Archive1
        6 Biological and Information Processing Mechanisms Underlying Autism NIMH Data Archive1
        2025 Minimally Verbal ASD: From Basic Mechanisms to Innovative Interventions NIMH Data Archive1
        2017 Wireless EEG System for Training Attention and Eye Movement in ASD NIMH Data Archive1
        2326 Familial Early-Onset Suicide Attempt Biomarkers NIMH Data Archive1
        2821 Cellular, molecular, and functional imaging approaches to understanding early neurodevelopment in autism NIMH Data Archive1
        2866 Investigating Social Competence in Youth with Autism: A Multisite RCT NIMH Data Archive1
        2921 Repetitive Thinking and Emotional Health in Adults with ASD NIMH Data Archive1
        1501 Neural and Behavioral Outcomes of Social Skills Groups in Children with ASD NIMH Data Archive1
        2353 Perception and central coherence in autism: A family genetic eye-tracking study NIMH Data Archive1
        1971 Rapid Phenotyping for Rare Variant Discovery in Autism NIMH Data Archive1
        Analysis
        Age: 0 to 1,260 months
        Sex: Both
        helpcenter.ndastudy.summary-tab

        NDA Help Center

        NDA Study - Summary Tab

        An NDA Study describes an analysis, pipeline result, or curated data release - including the cohorts, measures, and methods - referencing the underlying source data in the NDA. Once the data is referenced and the study is shared, the underlying data will not change. It will be immutable allowing others to access those data without change into near perpetuity. Only the assessments (i.e. typically rows in a database) and outcome measures (i.e. columns in a database) included in the study are shared. By sharing data this way (e.g. specific outcome measures by subject/timepoint) an ongoing project's other unpublished data - typically other research aims - will remain embargoed according to a project's established data sharing schedule (see collection).

        When a study is created, a Digital Object Identifier (DOI) is reserved by the NDA, but will not be active. Once the study is shared, the DOI will then be issued and if associated with a publication, the NDA DOI will be linked to the publication's DOI.

        Frequently Asked Questions

        • How can I get access to an NDA Study if I am involved in creating/modifying the NDA Study?
          The individual listed as an Investigator on the General tab of the NDA Collection and any individuals defined as administrators can be provided this privilege. When the study is shared, all of those that have approved access to the data are given read-only access.

        Glossary

        • Abstract
          The Abstract of the publication or other public disclosure of analysis results. The publication abstract is automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection. The field is editable.
        • Documents
          Provides links to additional documentation to help explain the NDA Study.
        • Cohort
          Summarizes the characteristics of a group of research subjects. The subject count is noted in parentheses.
        • Data Analysis
          Summarizes the Data Analysis methods used.
        • Data Usage
          Identifies the NDA Study as a Primary Analysis or Secondary Analysis.
        • Digital Object Identifier (DOI)
          A persistent and unique identifier that is issued for each NDA Study that may increase the visibility of a researcher's work. Authors are expected to reference the location of data in the publication using the DOI.
        • Download Button
          Adds all data from the current Collection or NDA Study to the Filter Cart.
        • Investigators
          The authors of the publication or other public disclosure of analysis results. The publication's authors are automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection. The field is editable and uses a last name, first name format with multiple names separated by semicolons.
        • Primary Analysis
          Primary Analysis is one of the Data Use types NDA recognizes for NDA Studies. It indicates that the NDA Study's creator was involved in the collection of the data (in whole or in part) used in the NDA Study. In other words, at least some and potentially all of the data used was originally collected by the creator of the NDA Study. A Primary Analysis Study.
        • NDA Study Owner
          The NDA user, who does not necessarily have to be one of the Investigators listed in the NDA Study, primarily involved in creating the NDA Study who is serving as the point of contact. The NDA user who creates the NDA Study is automatically assigned as the Study Owner.
        • Private
          The term 'Private' generally means not available to others; however, there are some slightly different meanings based on what is Private. The default state for an NDA Collection, NDA Study, Supporting Documentation, and data is Private and, therefore, accessible only to those users with appropriate Privileges so it will not be viewable and searchable publicly. A Collection may be Shared while the data and Supporting Documentation remain Private.
        • Results
          Provides a link to the publication or other public disclosure of analysis results defined in the NDA Study.
        • Secondary Analysis
          Secondary Analysis is one of the Data Use types NDA recognizes for NDA Studies. It indicates that the NDA Study's creator was not involved in the collection of the data (in whole or in part) used in the NDA Study, but was involved in the analysis of those data. In other words, none of the data used was originally collected by the creator of the NDA Study. A Secondary Analysis Study will provide an Attribution Report listing the Collections and the researchers responsible for collecting and depositing the original data.
        • Study Type
          The NDA Study Type can be either Analysis (i.e. often associated with a computational pipeline), Clinical Trial, Finding (i.e. a result associated with a publication, or Release (i.e. a dataset release, often annually) to indicate the type of work defined in the NDA Study. Studies, once shared do not change.
        • Analysis Study Type
          The Analysis Study Type is primarily used to share a pipeline; however, it could be used to share a statistical analysis or method.
        • Release Study Type
          A static, curated data set.
        • Finding Study Type
          The Finding Study Type associates data to a publication or some type of result.
        • Clinical Trial Study Type
          A Clinical Trial Study is a finding specific to a clinical trial.
        • Study ID Number
          The Study ID number is a unique three digit number routinely expressed as S### that is assigned by the NDA.
        • Study State
          The Study State indicates whether the Study is viewable, searchable, and if the associated data can be accessed by users with appropriate data access Permissions. The default Study State is Private, which means that only the Collection Owner and users with Read Only Privileges. Only the Study Owner can Share the Study.
        • Study Title
          The Study Title is generally the title of the publication or other public disclosure of analysis results. The publication title is automatically imported when creating a new NDA Study from a Create Study link associated with a Publication listed in a Collection. The field is editable.
        • Edit Button
          The Edit Button allows a user to modify or add information once authenticated and if the user has appropriate permissions.
        • Return Button (Study)
          The Return Button brings the user back to the Data from Papers page.
        • Sex
          Sex is defined at birth and can only be Male or Female. In some places in the NDA, we incorrectly used the data_element name of Gender. Users are encouraged to review definitions and not make assumptions based upon a data element name.
        • 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.
        • 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.
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