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1 Numbers reported are subjects by age
New Trial
New Project

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

Please select an experiment type below

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

The table search feature is case insensitive and targets the experiment id, experiment name and experiment type columns. The experiment id is searched only when the search term entered is a number, and filtered using a startsWith comparison. When the search term is not numeric the experiment name is used to filter the results.
SelectExperiment IdExperiment NameExperiment Type
Created On
24HI-NGS_R1Omics02/16/2011
475MB1-10 (CHOP)Omics06/07/2016
490Illumina Infinium PsychArray BeadChip AssayOmics07/07/2016
501PharmacoBOLD Resting StatefMRI07/27/2016
506PVPREFOmics08/05/2016
509ABC-CT Resting v2EEG08/18/2016
13Comparison of FI expression in Autistic and Neurotypical Homo SapiensOmics12/28/2010
18AGRE/Broad Affymetrix 5.0 Genotype ExperimentOmics01/06/2011
22Stitching PCR SequencingOmics02/14/2011
26ASD_MethylationOmics03/01/2011
29Microarray family 03 (father, mother, sibling)Omics03/24/2011
37Standard paired-end sequencing of BCRsOmics04/19/2011
38Illumina Mate-Pair BCR sequencingOmics04/19/2011
39Custom Jumping LibrariesOmics04/19/2011
40Custom CapBPOmics04/19/2011
41ImmunofluorescenceOmics05/11/2011
43Autism brain sample genotyping, IlluminaOmics05/16/2011
47ARRA Autism Sequencing Collaboration at Baylor. SOLiD 4 SystemOmics08/01/2011
53AGRE Omni1-quadOmics10/11/2011
59AGP genotypingOmics04/03/2012
60Ultradeep 454 sequencing of synaptic genes from postmortem cerebella of individuals with ASD and neurotypical controlsOmics06/23/2012
63Microemulsion PCR and Targeted Resequencing for Variant Detection in ASDOmics07/20/2012
76Whole Genome Sequencing in Autism FamiliesOmics01/03/2013
519RestingfMRI11/08/2016
90Genotyped IAN SamplesOmics07/09/2013
91NJLAGS Axiom Genotyping ArrayOmics07/16/2013
93AGP genotyping (CNV)Omics09/06/2013
106Longitudinal Sleep Study. H20 200. Channel set 2EEG11/07/2013
107Longitudinal Sleep Study. H20 200. Channel set 3EEG11/07/2013
108Longitudinal Sleep Study. AURA 200EEG11/07/2013
105Longitudinal Sleep Study. H20 200. Channel set 1EEG11/07/2013
109Longitudinal Sleep Study. AURA 400EEG11/07/2013
116Gene Expression Analysis WG-6Omics01/07/2014
131Jeste Lab UCLA ACEii: Charlie Brown and Sesame Street - Project 1Eye Tracking02/27/2014
132Jeste Lab UCLA ACEii: Animacy - Project 1Eye Tracking02/27/2014
133Jeste Lab UCLA ACEii: Mom Stranger - Project 2Eye Tracking02/27/2014
134Jeste Lab UCLA ACEii: Face Emotion - Project 3Eye Tracking02/27/2014
145AGRE/FMR1_Illumina.JHUOmics04/14/2014
146AGRE/MECP2_Sanger.JHUOmics04/14/2014
147AGRE/MECP2_Junior.JHUOmics04/14/2014
151Candidate Gene Identification in familial AutismOmics06/09/2014
152NJLAGS Whole Genome SequencingOmics07/01/2014
154Math Autism Study - Vinod MenonfMRI07/15/2014
155RestingfMRI07/25/2014
156SpeechfMRI07/25/2014
159EmotionfMRI07/25/2014
160syllable contrastEEG07/29/2014
167School-age naturalistic stimuliEye Tracking09/19/2014
44AGRE/Broad Affymetrix 5.0 Genotype ExperimentOmics06/27/2011
45Exome Sequencing of 20 Sporadic Cases of Autism Spectrum DisorderOmics07/15/2011
Collection - Add Experiment
Add Supporting Documentation
Select File

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

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

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Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
Course and Outcome of Bipolar Disorder in Youth (COBY)
Boris Birmaher 
The Course and Outcome of Bipolar Disorders in Youth (COBY) study has comprehensively characterized the clinical course of a large sample of youth with bipolar disorder (BD), and has identified demographic and clinical factors that are associated with different illness courses. To date, however, COBY has not included neuroimaging assessments. Including such assessments now will allow, for the first time, an evaluation of the impact of 13-year course of BD and treatment upon neural circuitry function and structure. Furthermore, the majority of COBY participants are currently between 18-30 years old, when the brain, and prefrontal cortex in particular, continues to develop. Including neuroimaging assessments in COBY participants now can thus take advantage of the neurodevelopmental processes occurring between 18-30 years where there are unique opportunities to intervene therapeutically to help normalize abnormalities in neural functioning and structure. Focusing on this age range will also provide a critically important opportunity to determine the extent to which neuroimaging measures predict future clinical course in adulthood. Having normal prefrontal cortical function and structure may predict better clinical course in adulthood, even in COBY participants with poor clinical course in youth, and may lead to decisions to reduce, or even stop, specific treatments in these individuals. In the proposed study, we will determine how previous BD clinical course (e.g., % time with mood symptoms vs. euthymic; % time with comorbid disorders) and treatment exposure from childhood into adulthood impacts neural circuitry functioning and structure supporting key NIMH RDoC information processing domains, and compare neuroimaging findings in COBY participants with those of demographically-matched healthy controls (Aim 1). We will also determine whether neuroimaging measures predict illness course in adulthood, beyond demographic and clinical factors, and previous clinical course in youth (Aim 2). We will use machine learning to explore patterns of whole brain functioning, white and gray matter structure, and clinical and demographic measures, that most accurately predict future clinical course at the individual subject level. The proposed study also provides a valuable opportunity to inform the field regarding the clinical and functional course and outcome from youth into adulthood in a large, well-characterized sample of people with BD. This is important because the clinical outcome of BD youth in adulthood remains uncertain, as only two studies with a total of 72 subjects followed BD youth into their early twenties. Structural and functional neuroimaging techniques will be employed in a representative subsample of COBY participants (n=120), and healthy controls (n=50). Comprehensive assessments of psychopathology and functioning will be collected at the time of neuroimaging, and twice more during the proposed project period in the 120 COBY participants. This proposal accords with the NIMHs mission to define developmental trajectories of mental disorders and develop strategies to better define risk and protective factors for disease trajectories across the lifespan, and with the RDoC initiative.
NIMH Data Archive
07/11/2016
Funding Completed
Close Out
No
$7,051,276.00
182
Loading Chart...
NIH - Extramural None



R01MH059929-16 Course and Outcome of Bipolar Disorder in Youth 05/01/2016 02/28/2022 120 331 UNIVERSITY OF PITTSBURGH AT PITTSBURGH $3,360,045.00
R01MH112544-01 1/2 Predicting Adult Outcomes in Bipolar Youth (PROBY) 01/10/2018 12/31/2023 462 462 UNIVERSITY OF PITTSBURGH AT PITTSBURGH $2,522,471.00
R01MH112543-01 2/2-Predicting Adult Outcomes in Bipolar Youth (PROBY) 05/01/2018 02/29/2024 218 179 BROWN UNIVERSITY $1,168,760.00

helpcenter.collection.general-tab

NDA Help Center

Collection - General Tab

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

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

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

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

Blinded Clinical Trial Status:

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

Funding Source

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

Supporting Documentation

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

Grant Information

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

Clinical Trials

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

Frequently Asked Questions

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

Glossary

  • Administrator Privilege
    A privilege provided to a user associated with an NDA Collection or NDA Study whereby that user can perform a full range of actions including providing privileges to other users.
  • Collection Owner
    Generally, the Collection Owner is the contact PI listed on a grant. Only one NDA user is listed as the Collection owner. Most automated emails are primarily sent to the Collection Owner.
  • Collection Phase
    The Collection Phase provides information on data submission as opposed to grant/project completion so while the Collection phase and grant/project phase may be closely related they are often different. Collection users with Administrative Privileges are encouraged to edit the Collection Phase. The Program Officer as listed in eRA (for NIH funded grants) may also edit this field. Changes must be saved by clicking the Save button at the bottom of the page. This field is sortable alphabetically in ascending or descending order. Collection Phase options include:
    • Pre-Enrollment: A grant/project has started, but has not yet enrolled subjects.
    • Enrolling: A grant/project has begun enrolling subjects. Data submission is likely ongoing at this point.
    • Data Analysis: A grant/project has completed enrolling subjects and has completed all data submissions.
    • Funding Completed: A grant/project has reached the project end date.
  • Collection Title
    An editable field with the title of the Collection, which is often the title of the grant associated with the Collection.
  • Grant
    Provides the grant number(s) for the grant(s) associated with the Collection. The field is a hyperlink so clicking on the Grant number will direct the user to the grant information in the NIH Research Portfolio Online Reporting Tools (RePORT) page.
  • Supporting Documentation
    Various documents and materials to enable efficient use of the data by investigators unfamiliar with the project and may include the research protocol, questionnaires, and study manuals.
  • NIH Research Initiative
    NDA Collections may be organized by scientific similarity into NIH Research Initiatives, to facilitate query tool user experience. NIH Research Initiatives map to one or multiple Funding Opportunity Announcements.
  • Permission Group
    Access to shared record-level data in NDA is provisioned at the level of a Permission Group. NDA Permission Groups consist of one or multiple NDA Collections that contain data with the same subject consents.
  • Planned Enrollment
    Number of human subject participants to be enrolled in an NIH-funded clinical research study. The data is provided in competing applications and annual progress reports.
  • Actual Enrollment
    Number of human subjects enrolled in an NIH-funded clinical research study. The data is provided in annual progress reports.
  • NDA Collection
    A virtual container and organization structure for data and associated documentation from one grant or one large project/consortium. It contains tools for tracking data submission and allows investigators to define a wide array of other elements that provide context for the data, including all general information regarding the data and source project, experimental parameters used to collect any event-based data contained in the Collection, methods, and other supporting documentation. They also allow investigators to link underlying data to an NDA Study, defining populations and subpopulations specific to research aims.
  • Data Use Limitations
    Data Use Limitations (DULs) describe the appropriate secondary use of a dataset and are based on the original informed consent of a research participant. NDA only accepts consent-based data use limitations defined by the NIH Office of Science Policy.
  • Total Subjects Shared
    The total number of unique subjects for whom data have been shared and are available for users with permission to access data.
IDNameCreated DateStatusType
554COBY scans12/20/2016ApprovedfMRI
helpcenter.collection.experiments-tab

NDA Help Center

Collection - Experiments

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

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

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

Frequently Asked Questions

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

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

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

Glossary

  • Experiment Status
    An Experiment must be Approved before data using the associated Experiment_ID may be uploaded.
  • Experiment ID
    The ID number automatically generated by NDA which must be included in the appropriate file when uploading data to link the Experiment Definition to the subject record.
Adult Self Report Clinical Assessments 114
Affective Lability Scale Clinical Assessments 101
Annett Handedness Inventory Clinical Assessments 101
Barratt Impulsivity Scale Clinical Assessments 101
Child Behavior Checklist (CBCL) 6-18 Clinical Assessments 1
Clinical Global Impression (CGI) Clinical Assessments 128
Drug Screen Clinical Assessments 101
Hamilton Rating Scale for Depression Clinical Assessments 101
Hollingshead Socioeconomic Rating Scale Clinical Assessments 129
Image Imaging 107
Kiddie-Sads Depression Clinical Assessments 128
Kiddie-Sads Mania Rating Scale Clinical Assessments 129
Life - RIFT (The Range of Impaired Functioning Tool) Clinical Assessments 114
MRI Scan Notes Imaging 100
Medication Adherance Form Clinical Assessments 112
Medications List Clinical Assessments 51
Menstrual History Clinical Assessments 129
Mood and Anxiety Symptom Questionnaire Clinical Assessments 101
Psychiatric Status Rating Clinical Assessments 67
Research Subject Clinical Assessments 129
Reward Post Task Imaging 96
Secondary Informant Clinical Assessments 2
Sensation Seeking Scale - Form Clinical Assessments 101
Smoking History Questionnaire Clinical Assessments 65
State-Trait Anxiety Inventory for Adults Clinical Assessments 101
Substance Use Questionnaire Clinical Assessments 105
Suicidal Ideation Behavior Reportable Event Form Clinical Assessments 129
The Positive and Negative Affect Schedule Adult Version Clinical Assessments 100
Traumatic Events Clinical Assessments 129
Treatment Form Clinical Assessments 113
Young Mania Rating Scale Clinical Assessments 101
Youth Self Report Clinical Assessments 1
helpcenter.collection.shared-data-tab

NDA Help Center

Collection - Shared Data

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

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

Frequently Asked Questions

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

Glossary

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

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

Publications

Publications relevant to NDA data are listed below. Most displayed publications have been associated with the grant within Pubmed. Use the "+ New Publication" button to add new publications. Publications relevant/not relevant to data expected are categorized. Relevant publications are then linked to the underlying data by selecting the Create Study link. Study provides the ability to define cohorts, assign subjects, define outcome measures and lists the study type, data analysis and results. Analyzed data and results are expected in this way.

PubMed IDStudyTitleJournalAuthorsDateStatus
38007103Create StudyValidation of a youth suicide risk calculator in an adult sample with bipolar disorder.Journal of affective disordersFiedorowicz, Jess G; Merranko, John A; Goldstein, Tina R; Hower, Heather; Iyengar, Satish; Hafeman, Danella M; Hunt, Jeffrey I; Strober, Michael; Keller, Martin B; Goldstein, Benjamin I; Diler, Rasim S; Siddiqi, Sara; Birmaher, BorisFebruary 15, 2024Not Determined
36220840Create StudyWorking memory updating in individuals with bipolar and unipolar depression: fMRI study.Translational psychiatryManelis, Anna; Halchenko, Yaroslav O; Bonar, Lisa; Stiffler, Richelle S; Satz, Skye; Miceli, Rachel; Ladouceur, Cecile D; Bebko, Genna; Iyengar, Satish; Swartz, Holly A; Phillips, Mary LOctober 11, 2022Not Determined
36106505Create StudyShape analysis of subcortical structures in obsessive-compulsive disorder and the relationship with comorbid anxiety, depression, and medication use: A meta-analysis by the OCD Brain Imaging Consortium.Brain and behaviorFouche, Jean-Paul; Groenewold, Nynke A; Sevenoaks, Tatum; Heany, Sarah; Lochner, Christine; Alonso, Pino; Batistuzzo, Marcelo C; Cardoner, Narcis; Ching, Christopher R K; de Wit, Stella J; Gutman, Boris; Hoexter, Marcelo Q; Jahanshad, Neda; Kim, Minah; Kwon, Jun Soo; Mataix-Cols, David; Menchon, Jose M; Miguel, Euripedes C; Nakamae, Takashi; Phillips, Mary L; Pujol, Jesus; Sakai, Yuki; Yun, Je-Yeon; Soriano-Mas, Carles; Thompson, Paul M; Yamada, Kei; Veltman, Dick J; van den Heuvel, Odile A; Stein, Dan JOctober 1, 2022Not Determined
36002150Create StudyA risk calculator to predict suicide attempts among individuals with early-onset bipolar disorder.Bipolar disordersGoldstein, Tina R; Merranko, John; Hafeman, Danella; Gill, Mary Kay; Liao, Fangzi; Sewall, Craig; Hower, Heather; Weinstock, Lauren; Yen, Shirley; Goldstein, Benjamin; Keller, Martin; Strober, Michael; Ryan, Neal; Birmaher, BorisNovember 1, 2022Not Determined
35743502Create StudyWhite Matter Correlates of Early-Onset Bipolar Illness and Predictors of One-Year Recurrence of Depression in Adults with Bipolar Disorder.Journal of clinical medicineLima Santos, João Paulo; Bertocci, Michele; Bebko, Genna; Goldstein, Tina; Kim, Tae; Iyengar, Satish; Bonar, Lisa; Gill, MaryKay; Merranko, John; Yendiki, Anastasia; Birmaher, Boris; Phillips, Mary L; Versace, AmeliaJune 15, 2022Not Determined
35491274Create StudyA Novel Insular/Orbital-Prelimbic Circuit That Prevents Persistent Avoidance in a Rodent Model of Compulsive Behavior.Biological psychiatryMartínez-Rivera, Freddyson J; Pérez-Torres, José; Velázquez-Díaz, Coraly D; Sánchez-Navarro, Marcos J; Huertas-Pérez, Carlos I; Diehl, Maria M; Phillips, Mary L; Haber, Suzanne N; Quirk, Gregory JJune 1, 2023Not Determined
35331820Create StudyWhite matter predictors of worsening of subthreshold hypomania severity in non-bipolar young adults parallel abnormalities in individuals with bipolar disorder.Journal of affective disordersSantos, João Paulo Lima; Versace, Amelia; Stiffler, Richelle S; Aslam, Haris A; Lockovich, Jeanette C; Bonar, Lisa; Bertocci, Michele; Iyengar, Satish; Bebko, Genna; Skeba, Alexander; Gill, Mary Kay; Monk, Kelly; Hickey, Mary Beth; Birmaher, Boris; Phillips, Mary LJune 1, 2022Not Determined
35033593Create StudyHigher socioeconomic status and less parental psychopathology improve prognosis in youths with bipolar disorder.Journal of affective disordersDiler, Rasim S; Merranko, John A; Hafeman, Danella; Goldstein, Tina R; Goldstein, Benjamin I; Hower, Heather; Gill, Mary Kay; Axelson, David A; Ryan, Neal; Strober, Michael; Keller, Martin B; Yen, Shirley; Hunt, Jeffrey I; Weinstock, Lauren M; Iyengar, Satish; Birmaher, Boris BApril 1, 2022Not Determined
34990625Create StudyRisk factors preceding new onset abuse among youth with bipolar disorder: A longitudinal prospective analysis.Journal of affective disordersAndreu-Pascual, Maria; Merranko, John; Gill, Mary Kay; Levenson, Jessica C; Hafeman, Danella; Hower, Heather; Yen, Shirley; Strober, Michael; Goldstein, Benjamin I; Diler, Rasim; Ryan, Neal D; Weinstock, Lauren M; Keller, Martin B; Axelson, David; Birmaher, Boris; Goldstein, Tina RMarch 1, 2022Not Determined
34563392Create StudyValidation of the youth mood recurrences risk calculator in an adult sample with bipolar disorder.Journal of affective disordersFiedorowicz, Jess G; Merranko, John A; Iyengar, Satish; Hower, Heather; Gill, Mary Kay; Yen, Shirley; Goldstein, Tina R; Strober, Michael; Hafeman, Danella; Keller, Martin B; Goldstein, Benjamin I; Diler, Rasim S; Hunt, Jeffrey I; Birmaher, Boris BDecember 1, 2021Not Determined
33744993Create StudyFacial emotion recognition and mood symptom course in young adults with childhood-onset bipolar disorder.European archives of psychiatry and clinical neuroscienceMacPherson, Heather A; Kudinova, Anastacia Y; Jenkins, Gracie A; Kim, Kerri L; Radoeva, Petya D; Gilbert, Anna C; Barthelemy, Christine; DeYoung, Lena; Yen, Shirley; Hower, Heather; Hunt, Jeffrey; Keller, Martin B; Dickstein, Daniel POctober 1, 2021Not Determined
33418377Create StudyLongitudinal course of depressive symptom severity among youths with bipolar disorders: Moderating influences of sustained attention and history of child maltreatment.Journal of affective disordersVaughn-Coaxum, Rachel A; Merranko, John; Birmaher, Boris; Dickstein, Daniel P; Hafeman, Danella; Levenson, Jessica C; Liao, Fangzi; Gill, Mary Kay; Hower, Heather; Goldstein, Benjamin I; Strober, Michael; Ryan, Neal D; Diler, Rasim; Keller, Martin B; Yen, Shirley; Weinstock, Lauren M; Axelson, David; Goldstein, Tina RMarch 1, 2021Not Determined
33392723Create StudyRelationship between cognitive flexibility and subsequent course of mood symptoms and suicidal ideation in young adults with childhood-onset bipolar disorder.European child & adolescent psychiatryMacPherson, Heather A; Kudinova, Anastacia Y; Schettini, Elana; Jenkins, Gracie A; Gilbert, Anna C; Thomas, Sarah A; Kim, Kerri L; Radoeva, Petya D; Fenerci, Rebecca L Babcock; Yen, Shirley; Hower, Heather; Hunt, Jeffrey; Keller, Martin B; Dickstein, Daniel PFebruary 1, 2022Not Determined
33340226Create StudyProspectively ascertained mania and hypomania among young adults with child- and adolescent-onset bipolar disorder.Bipolar disordersHafeman, Danella M; Goldstein, Tina R; Strober, Michael; Merranko, John; Gill, Mary Kay; Liao, Fangzi; Diler, Rasim S; Ryan, Neal D; Goldstein, Benjamin I; Axelson, David A; Keller, Martin B; Hunt, Jeffrey I; Hower, Heather; Weinstock, Lauren M; Yen, Shirley; Birmaher, BorisAugust 1, 2021Not Determined
33113597Create StudySex Differences in the Longitudinal Course and Outcome of Bipolar Disorder in Youth.The Journal of clinical psychiatryMitchell, Rachel H B; Hower, Heather; Birmaher, Boris; Strober, Michael; Merranko, John; Rooks, Brian; Goldstein, Tina R; Hunt, Jeffrey I; Dickstein, Daniel P; Diler, Rasim S; Ryan, Neal D; Gill, Mary Kay; Axelson, David; Keller, Martin B; Yen, Shirley; Goldstein, Benjamin IOctober 27, 2020Not Determined
33107600Create StudyA Bayesian multilevel analysis of the longitudinal associations between relationship quality and suicidal ideation and attempts among youth with bipolar disorder.Journal of child psychology and psychiatry, and allied disciplinesSewall, Craig J R; Girard, Jeffrey M; Merranko, John; Hafeman, Danella; Goldstein, Benjamin I; Strober, Michael; Hower, Heather; Weinstock, Lauren M; Yen, Shirley; Ryan, Neal D; Keller, Martin B; Liao, Fangzi; Diler, Rasim S; Kay Gill, Mary; Axelson, David; Birmaher, Boris; Goldstein, Tina RJuly 1, 2021Not Determined
32919945Create StudyWhite Matter Correlates of Suicidality in Adults With Bipolar Disorder Who Have Been Prospectively Characterized Since Childhood.Biological psychiatry. Cognitive neuroscience and neuroimagingLima Santos, João Paulo; Brent, David; Bertocci, Michele; Mailliard, Sarrah; Bebko, Genna; Goldstein, Tina; Kim, Tae; Iyengar, Satish; Hafeman, Danella; Fenster-Ehrlich, Vilde Chaya; Skeba, Alexander; Bonar, Lisa; Abdul-Waalee, Halimah; Gill, MaryKay; Merranko, John; Birmaher, Boris; Phillips, Mary L; Versace, AmeliaJanuary 1, 2021Not Determined
32725849Create StudyWhat we learn about bipolar disorder from large-scale neuroimaging: Findings and future directions from the ENIGMA Bipolar Disorder Working Group.Human brain mappingChing, Christopher R K; Hibar, Derrek P; Gurholt, Tiril P; Nunes, Abraham; Thomopoulos, Sophia I; Abé, Christoph; Agartz, Ingrid; Brouwer, Rachel M; Cannon, Dara M; de Zwarte, Sonja M C; Eyler, Lisa T; Favre, Pauline; Hajek, Tomas; Haukvik, Unn K; Houenou, Josselin; Landén, Mikael; Lett, Tristram A; McDonald, Colm; Nabulsi, Leila; Patel, Yash; Pauling, Melissa E; Paus, Tomas; Radua, Joaquim; Soeiro-de-Souza, Marcio G; Tronchin, Giulia; van Haren, Neeltje E M; Vieta, Eduard; Walter, Henrik; Zeng, Ling-Li; Alda, Martin; Almeida, Jorge; Alnaes, Dag; Alonso-Lana, Silvia; Altimus, Cara; Bauer, Michael; Baune, Bernhard T; Bearden, Carrie E; Bellani, Marcella; Benedetti, Francesco; Berk, Michael; Bilderbeck, Amy C; Blumberg, Hilary P; Bøen, Erlend; Bollettini, Irene; Del Mar Bonnin, Caterina; Brambilla, Paolo; Canales-Rodríguez, Erick J; Caseras, Xavier; Dandash, Orwa; Dannlowski, Udo; Delvecchio, Giuseppe; Díaz-Zuluaga, Ana M; Dima, Danai; Duchesnay, Édouard; Elvsåshagen, Torbjørn; Fears, Scott C; Frangou, Sophia; Fullerton, Janice M; Glahn, David C; Goikolea, Jose M; Green, Melissa J; Grotegerd, Dominik; Gruber, Oliver; Haarman, Bartholomeus C M; Henry, Chantal; Howells, Fleur M; Ives-Deliperi, Victoria; Jansen, Andreas; Kircher, Tilo T J; Knöchel, Christian; Kramer, Bernd; Lafer, Beny; López-Jaramillo, Carlos; Machado-Vieira, Rodrigo; MacIntosh, Bradley J; Melloni, Elisa M T; Mitchell, Philip B; Nenadic, Igor; Nery, Fabiano; Nugent, Allison C; Oertel, Viola; Ophoff, Roel A; Ota, Miho; Overs, Bronwyn J; Pham, Daniel L; Phillips, Mary L; Pineda-Zapata, Julian A; Poletti, Sara; Polosan, Mircea; Pomarol-Clotet, Edith; Pouchon, Arnaud; Quidé, Yann; Rive, Maria M; Roberts, Gloria; Ruhe, Henricus G; Salvador, Raymond; Sarró, Salvador; Satterthwaite, Theodore D; Schene, Aart H; Sim, Kang; Soares, Jair C; Stäblein, Michael; Stein, Dan J; Tamnes, Christian K; Thomaidis, Georgios V; Upegui, Cristian Vargas; Veltman, Dick J; Wessa, Michèle; Westlye, Lars T; Whalley, Heather C; Wolf, Daniel H; Wu, Mon-Ju; Yatham, Lakshmi N; Zarate, Carlos A; Thompson, Paul M; Andreassen, Ole A; ENIGMA Bipolar Disorder Working GroupJanuary 1, 2022Not Determined
32479323Create StudyCorrelates, Course, and Outcomes of Increased Energy in Youth with Bipolar Disorder.Journal of affective disordersFrazier, Elisabeth A; Hunt, Jeffrey I; Hower, Heather; Jones, Richard N; Birmaher, Boris; Strober, Michael; Goldstein, Benjamin I; Keller, Martin B; Goldstein, Tina R; Weinstock, Lauren M; Dickstein, Daniel P; Diler, Rasim S; Ryan, Neal D; Gill, Mary Kay; Axelson, David; Yen, ShirleyJune 2020Not Determined
32469795Create StudyThe Effect of Traumatic Events on the Longitudinal Course and Outcomes of Youth with Bipolar Disorder.Journal of affective disordersAndreu Pascual, Maria; Levenson, Jessica C; Merranko, John; Gill, Mary Kay; Hower, Heather; Yen, Shirley; Strober, Michael; Goldstein, Tina R; Goldstein, Benjamin I; Ryan, Neal D; Weinstock, Lauren M; Keller, Martin B; Axelson, David; Birmaher, BorisSeptember 2020Not Determined
32158000Create StudyCourse of longitudinal psychosocial functioning in bipolar youth transitioning to adults.Journal of affective disordersLee, Erica J; Hower, Heather; Jones, Richard N; Birmaher, Boris; Strober, Michael; Goldstein, Benjamin I; Merranko, John; Keller, Martin B; Goldstein, Tina R; Weinstock, Lauren M; Dickstein, Daniel P; Hunt, Jeffrey I; Diler, Rasim S; Ryan, Neal D; Gill, Mary Kay; Axelson, David; Yen, ShirleyMay 2020Not Determined
31978620Create StudyPredicting Personalized Risk of Mood Recurrences in Youths and Young Adults With Bipolar Spectrum Disorder.Journal of the American Academy of Child and Adolescent PsychiatryBirmaher, Boris; Merranko, John A; Gill, Mary Kay; Hafeman, Danella; Goldstein, Tina; Goldstein, Benjamin; Hower, Heather; Strober, Michael; Axelson, David; Ryan, Neal; Yen, Shirley; Diler, Rasim; Iyengar, Satish; Kattan, Michael W; Weinstock, Lauren; Keller, MartinOctober 2020Not Determined
31866767Create StudyDebate: Fomenting controversy regarding pediatric bipolar disorder.Child and adolescent mental healthGoldstein, Benjamin I; Post, Robert M; Birmaher, BorisFebruary 2019Not Determined
31749297Create StudyLongitudinal course and risk factors associated with psychosis in bipolar youths.Bipolar disordersShalev, Amit; Merranko, John; Gill, Mary Kay; Goldstein, Tina; Liao, Fangzi; Goldstein, Benjamin I; Hower, Heather; Ryan, Neal; Strober, Michael; Iyengar, Satish; Keller, Martin; Yen, Shirley; Weinstock, Lauren M; Axelson, David; Birmaher, BorisMarch 2020Not Determined
31369795Create StudyLithium Versus Other Mood-Stabilizing Medications in a Longitudinal Study of Youth Diagnosed With Bipolar Disorder.Journal of the American Academy of Child and Adolescent PsychiatryHafeman, Danella M; Rooks, Brian; Merranko, John; Liao, Fangzi; Gill, Mary Kay; Goldstein, Tina R; Diler, Rasim; Ryan, Neal; Goldstein, Benjamin I; Axelson, David A; Strober, Michael; Keller, Martin; Hunt, Jeffrey; Hower, Heather; Weinstock, Lauren M; Yen, Shirley; Birmaher, BorisOctober 2020Not Determined
31365195Create StudyHigh Prevalence of Metabolic Syndrome Among Adolescents and Young Adults With Bipolar Disorder.The Journal of clinical psychiatryLi, Christine; Birmaher, Boris; Rooks, Brian; Gill, Mary Kay; Hower, Heather; Axelson, David A; Dickstein, Daniel P; Goldstein, Tina R; Liao, Fangzi; Yen, Shirley; Hunt, Jeffrey; Iyengar, Satish; Ryan, Neal D; Strober, Michael A; Keller, Martin B; Goldstein, Benjamin IJuly 2019Not Determined
31159677Create StudyInterpersonal Relationships and Suicidal Ideation in Youth with Bipolar Disorder.Archives of suicide research : official journal of the International Academy for Suicide ResearchSewall, Craig Jeffrey Robb; Goldstein, Tina R; Salk, Rachel H; Merranko, John; Gill, Mary K; Strober, Michael; Keller, Martin B; Hafeman, Danella; Ryan, Neal D; Yen, Shirley; Hower, Heather; Liao, Fangzi; Birmaher, BorisApril 2020Not Determined
31025494Create StudyChildhood factors associated with increased risk for mood episode recurrences in bipolar disorder-A systematic review.Bipolar disordersEstrada-Prat, Xavier; Van Meter, Anna R; Camprodon-Rosanas, Ester; Batlle-Vila, Santiago; Goldstein, Benjamin I; Birmaher, BorisSeptember 2019Not Determined
30961832Create StudyNeural Markers That Distinguish Bipolar Disorder From Major Depressive Disorder: Moving Closer to a Reality.Biological psychiatry. Cognitive neuroscience and neuroimagingPhillips, Mary LApril 2019Not Determined
30616161Create StudyPreliminary analysis of resting state functional connectivity in young adults with subtypes of bipolar disorder.Journal of affective disordersThomas, Sarah A; Christensen, Rachel E; Schettini, Elana; Saletin, Jared M; Ruggieri, Amanda L; MacPherson, Heather A; Kim, Kerri L; Dickstein, Daniel PMarch 2019Not Determined
30605876Create StudyPredictors of longitudinal psychosocial functioning in bipolar youth transitioning to adults.Journal of affective disordersHower, Heather; Lee, Erica J; Jones, Richard N; Birmaher, Boris; Strober, Michael; Goldstein, Benjamin I; Merranko, John; Keller, Martin B; Goldstein, Tina R; Weinstock, Lauren M; Dickstein, Daniel P; Hunt, Jeffrey I; Diler, Rasim S; Ryan, Neal D; Gill, Mary Kay; Axelson, David; Yen, ShirleyMarch 2019Not Determined
30274650Create StudyA Risk Calculator to Predict the Individual Risk of Conversion From Subthreshold Bipolar Symptoms to Bipolar Disorder I or II in Youth.Journal of the American Academy of Child and Adolescent PsychiatryBirmaher, Boris; Merranko, John A; Goldstein, Tina R; Gill, Mary Kay; Goldstein, Benjamin I; Hower, Heather; Yen, Shirley; Hafeman, Danella; Strober, Michael; Diler, Rasim S; Axelson, David; Ryan, Neal D; Keller, Martin BOctober 2018Not Determined
29909300Create StudyParsing cyclothymic disorder and other specified bipolar spectrum disorders in youth.Journal of affective disordersVan Meter, Anna; Goldstein, Benjamin I; Goldstein, Tina R; Yen, Shirley; Hower, Heather; Strober, Michael; Merranko, John A; Gill, Mary Kay; Diler, Rasim S; Axelson, David; Ryan, Neal D; Keller, Martin B; Birmaher, BorisOctober 2018Not Determined
29702451Create StudyDevelopmental evaluation of family functioning deficits in youths and young adults with childhood-onset bipolar disorder.Journal of affective disordersMacPherson, Heather A; Ruggieri, Amanda L; Christensen, Rachel E; Schettini, Elana; Kim, Kerri L; Thomas, Sarah A; Dickstein, Daniel PAugust 2018Not Determined
29413144Create StudySexual Risk Behavior Among Youth With Bipolar Disorder: Identifying Demographic and Clinical Risk Factors.Journal of the American Academy of Child and Adolescent PsychiatryKrantz, Megan; Goldstein, Tina; Rooks, Brian; Merranko, John; Liao, Fangzi; Gill, Mary Kay; Diler, Rasim; Hafeman, Danella; Ryan, Neal; Goldstein, Benjamin; Yen, Shirley; Hower, Heather; Hunt, Jeffrey; Keller, Martin; Strober, Michael; Axelson, David; Birmaher, BorisFebruary 2018Not Determined
28678992Create StudyAssessment of a Person-Level Risk Calculator to Predict New-Onset Bipolar Spectrum Disorder in Youth at Familial Risk.JAMA psychiatryHafeman, Danella M; Merranko, John; Goldstein, Tina R; Axelson, David; Goldstein, Benjamin I; Monk, Kelly; Hickey, Mary Beth; Sakolsky, Dara; Diler, Rasim; Iyengar, Satish; Brent, David A; Kupfer, David J; Kattan, Michael W; Birmaher, BorisAugust 1, 2017Not Determined
28653799Create StudyLongitudinal cognitive trajectories and associated clinical variables in youth with bipolar disorder.Bipolar disordersFrías, Álvaro; Dickstein, Daniel P; Merranko, John; Gill, Mary Kay; Goldstein, Tina R; Goldstein, Benjamin I; Hower, Heather; Yen, Shirley; Hafeman, Danella M; Liao, Fangzi; Diler, Rasim; Axelson, David; Strober, Michael; Hunt, Jeffrey I; Ryan, Neal D; Keller, Martin B; Birmaher, BorisJune 1, 2017Relevant
28359032Create StudyPsychometrics of the screen for adult anxiety related disorders (SCAARED)- A new scale for the assessment of DSM-5 anxiety disorders.Psychiatry researchAngulo, Melina; Rooks, Brian T; Gill, MaryKay; Goldstein, Tina; Sakolsky, Dara; Goldstein, Benjamin; Monk, Kelly; Hickey, Mary Beth; Diler, Rasim S; Hafeman, Danella; Merranko, John; Axelson, David; Birmaher, BorisJuly 2017Not Relevant
27871641Create StudyLongitudinal Course of Bipolar Disorder in Youth With High-Functioning Autism Spectrum Disorder.Journal of the American Academy of Child and Adolescent PsychiatryBorue, Xenia; Mazefsky, Carla; Rooks, Brian T; Strober, Michael; Keller, Martin B; Hower, Heather; Yen, Shirley; Gill, Mary Kay; Diler, Rasim S; Axelson, David A; Goldstein, Benjamin I; Goldstein, Tina R; Ryan, Neal; Liao, Fangzi; Hunt, Jeffrey I; Dickstein, Daniel P; Birmaher, BorisDecember 2016Not Relevant
27765159Create StudySex Differences and Personalized Psychiatric Care.Biological psychiatryEckstrand, Kristen L; Travis, Michael John; Forbes, Erika E; Phillips, Mary LouiseNovember 2016Not Determined
27343879Create StudyThe Risks of Persistent Irritability.Journal of the American Academy of Child and Adolescent PsychiatryBirmaher BJuly 2016Not Determined
26438382Create StudyCognitive flexibility and performance in children and adolescents with threshold and sub-threshold bipolar disorder.European child & adolescent psychiatryDickstein, Daniel P; Axelson, David; Weissman, Alexandra B; Yen, Shirley; Hunt, Jeffrey I; Goldstein, Benjamin I; Goldstein, Tina R; Liao, Fangzi; Gill, Mary Kay; Hower, Heather; Frazier, Thomas W; Diler, Rasim S; Youngstrom, Eric A; Fristad, Mary A; Arnold, L Eugene; Findling, Robert L; Horwitz, Sarah M; Kowatch, Robert A; Ryan, Neal D; Strober, Michael; Birmaher, Boris; Keller, Martin BJune 2016Not Relevant
helpcenter.collection.publications-tab

NDA Help Center

Collection - Publications

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

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

Frequently Asked Questions

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

Glossary

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

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

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

Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Research Subject and Pedigree info icon
12001/15/2017
129
Approved
To create your project's Data Expected list, use the "+New Data Expected" to add or request existing structures and to request new Data Structures that are not in the NDA Data Dictionary.

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

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

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

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

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

Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Mania Rating Scale info icon
12001/15/2017
101
Approved
Positive and Negative Affect Schedule info icon
12001/15/2017
100
Approved
Mood and Anxiety Symptom Questionnaire info icon
12001/15/2017
101
Approved
Demographics info icon
12001/15/2017
129
Approved
Child Behavior Checklist (CBCL) info icon
12001/15/2017
1
Approved
Clinical Global Impression (CGI) info icon
12001/15/2017
128
Approved
Suicidal Ideation Behavior Reportable Event Form info icon
12001/15/2017
129
Approved
MRI Scan Notes info icon
905/15/2017
100
Approved
Treatment Form info icon
12001/15/2017
113
Approved
Kiddie-Sads (K-SADS) info icon
12001/15/2017
129
Approved
Medication Adherance Form info icon
12001/15/2017
112
Approved
Physical Exam info icon
12001/15/2017
0
Approved
Handedness Form info icon
905/15/2017
101
Approved
Medications List info icon
12001/15/2017
51
Approved
Range of Impaired Functioning Tool info icon
12001/15/2017
114
Approved
Substance Use Questionnaire info icon
12001/15/2017
105
Approved
Menstrual History info icon
12001/15/2017
129
Approved
State-Trait Anxiety Inventory for Adults info icon
12001/15/2017
101
Approved
Youth Self Report info icon
12001/15/2017
1
Approved
Hamilton Rating Scale for Depression info icon
12001/15/2017
101
Approved
Drug Screen info icon
12001/15/2017
101
Approved
Adult Self Report info icon
12001/15/2017
114
Approved
Imaging (Structural, fMRI, DTI, PET, microscopy) info icon
12001/15/2017
107
Approved
Traumatic Events info icon
12001/15/2017
129
Approved
Sensation Seeking Scale - Form info icon
12001/15/2017
101
Approved
Barratt Impulsivity Scale info icon
12001/15/2017
101
Approved
Affective Lability Scale info icon
12001/15/2017
101
Approved
Psychiatric Status Rating info icon
12001/15/2017
67
Approved
Secondary Informant info icon
12001/15/2017
2
Approved
Smoking History Questionnaire info icon
12001/15/2017
65
Approved
Reward Post Task info icon
12001/15/2017
96
Approved
Structure not yet defined
No Status history for this Data Expected has been recorded yet
helpcenter.collection.data-expected-tab

NDA Help Center

Collection - Data Expected

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

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

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

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

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

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

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

Frequently Asked Questions

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

Glossary

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

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

Associated Studies

Studies that have been defined using data from a Collection are important criteria to determine the value of data shared. The number of subjects column displays the counts from this Collection that are included in a Study, out of the total number of subjects in that study. The Data Use column represents whether or not the study is a primary analysis of the data or a secondary analysis. State indicates whether the study is private or shared with the research community.

Study NameAbstractCollection/Study SubjectsData UsageState
No records found.
helpcenter.collection.associated-studies-tab

NDA Help Center

Collection - Associated Studies

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

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

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

Frequently Asked Questions

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

Glossary

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