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.

  • A Collection is a virtual container into which data will be submitted and shared.  It also provides important information about the project, funding amounts, reported enrollment amounts, data sharing schedule, and results that will help program staff better evaluate the grant.  While the general rule is that one Collection is created for each grant, it may be appropriate to associated multiple grants with a single Collection in the case of collaborative projects or projects submitting data through a single site such as a Data Coordinating Center. 

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

  • 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. 

  • 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 Landing 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.

  • 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.  

NDA Help Center

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 Landing 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.

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

  • 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.

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 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.

  • 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.

  • 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.  

NDA Help Center

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 'Download/Add to 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).

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

  • 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.

  • 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 Landing 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 New Cohort Button allows the user to define the characteristics of a cohort and add GUIDs to a cohort that has not yet been defined.

  • 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. 

  • 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.  

  • 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.  

NDA Help Center

Frequently Asked Questions

Glossary

NDA Help Center

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 Landing 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.  

NDA Help Center

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.

  • A Collection is a virtual container into which data will be submitted and shared.  It also provides important information about the project, funding amounts, reported enrollment amounts, data sharing schedule, and results that will help program staff better evaluate the grant.  While the general rule is that one Collection is created for each grant, it may be appropriate to associated multiple grants with a single Collection in the case of collaborative projects or projects submitting data through a single site such as a Data Coordinating Center. 

  • 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://ndar.nih.gov/data_dictionary.html. 

NDA Help Center

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://ndar.nih.gov/data_dictionary.html. 

  • 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.  

NDA Help Center

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 Landing 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.

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 Landing 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.

NDA Help Center

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.  

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.

  • Created at a study site, the Global Unique Identifier (GUID) is based on personally identifiable information (PII) typically found in a birth certificate (name, data of birth, sex, city of birth) to create a deidentified ID number.  PII is never transmitted to the NDA, rather a one way hash code sequence is transmitted which cannot be broken to identify the subject's PII.

  • 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 pseudo-GUID 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 pseudo-GUID 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.

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.

NDA Help Center

Filter Cart

The Filter Cart provides a way to query and access data for which you may be interested.  There are multiple places to go query and Add to Filter Cart (Sometimes called Download).  

A few points related to the filter cart are important to understand with the NDA Query/Filter implementation: 

First, the filter cart is populated asyncronously.  So, when you add subjects, sometimes it may take a few minutes to populate.  You can continue to do other things during this time. 

When you are adding your first filter, all data associated with your query will be added to the filter cart (whether it be a collection, a concept, a study, a data structure/elment or subjects). Not all data available for the subjects selected will necessarily be displayed.  For example, if you select the NDA imaging structure image03, and further restrict that query to scan_type fMRI, only fMRI images will appear and only the image03 structure will be available.  However, if you want to see all of the clinical and phenotype, then select, "Find All Subject Data" to see all the data avaialble for those subjects.  

when a secord or third filter is applied, an AND condition is used to determine the subjects that are exist in all filters.  If the subject does not appear in any filter, that subjects data will be excluded from your filter cart. Given the sparcity of data in the NDA, it is possible for no subjects to appear across filters.  If that happens, clear your filter cart, and start over.  

The NDA is looking to enhance query/filtering.  Until additional tools become available, it is best to package more data than you need and then package and download the data and use other tools to further restrict and analyze the data.  If you have any questions on data access, are interested in using avaialble web services or need help accessing data, please contact us for assistance.  

Frequently Asked Questions

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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.  

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 Landing 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.

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The filters you have selected from various query interfaces will be stored here, in the 'Filter Cart'. The database will be queried using filters added to your 'Filter Cart', when multiple filters are defined, each will be executed using 'AND' logic, so with each filter that is applied the result set gets smaller.

From the 'Filter Cart' you can inspect each of the filters that have been defined, and you also have the option to remove filters. The 'Filter Cart' itself will display the number of filters applied along with the number of subjects that are identified by the combination of those filters. For example a GUID filter with two subjects, followed by a GUID filter for just one of those subjects would return only data for the subject that is in both GUID filters.

If you have a question about the filter cart, or underlying filters please contact the help desk at The NDA Help Desk

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              Holly Stessman hstess@u.washington.edu Finding Shared
              More Info Eichler, Evan; Stessman, H; Xiong, B; Coe, B; Wang, T; Hoekzema, K; Fenckova, M; Kvarnung, M; Gerdts, J; Trinh, S; Cosemans, N; Vives, L; Lin, J; Turner, T; Santen, G; Gecz, J; Shaw, M; Anderlid, B; Nordgren, A; Lindstrand, A; Schwartz, C; Kooy, F; Vandeweyer, G; Helsmoortel, C; Romano, C; Alberti, A; Vinci, M; Avola, E; Giusto, S; Courchesne, E; Pramparo, T; Pierce, K; Nalabolu, S; Amaral, D; Scheffer, I; Delatycki, M; Lockhart, P; Hormozdiari, F; Harich, B; Castells-Hobau, A; Xia, K; Peeters, H; Nordenskjold, M; Schenck, A; Bernier, R
              Gene-disruptive mutations contribute to the biology of neurodevelopmental disorders (NDDs), but most pathogenic genes are not known. We sequenced 208 candidate genes from >11,730 patients and >2,867 controls. We report 91 genes with an excess of de novo mutations or private disruptive mutations in 5.7% of patients, including 38 novel NDD genes. Drosophila functional assays of a subset bolster their involvement in NDDs. We identify 25 genes that show a bias for autism versus intellectual disability and highlight a network associated with high-functioning autism (FSIQ>100). Clinical follow-up for NAA15, KMT5B, and ASH1L reveals novel syndromic and non-syndromic forms of disease. [Note: Upload of individual sample-level raw data files is ongoing and expected to be completed by 02/28/2017.]
              More Info 10.15154/1340671
              More Info Primary Analysis
              Finding
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Age: 0 to 1,200 months
              Sex: Both
              Genotyping/NGSNGS Analysis > Rare Variant Burden and...StatisticalSignificance > FDR > <1%