NIMH Data Archive - Data

Genomics

Neuroimaging

Phenotype¹

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Clinical Trial

¹ Numbers reported are subjects by age

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

Collection - Use Existing Experiment

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

The table search feature is case insensitive and targets the experiment id, experiment name and experiment type columns. The experiment id is searched only when the search term entered is a number, and filtered using a startsWith comparison. When the search term is not numeric the experiment name is used to filter the results.

Select	Experiment Id	Experiment Name	Experiment Type	Created On

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

Collection - Add Experiment

Add Supporting Documentation

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URL:

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

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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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OPTIMIZING AND PERSONALIZING INTERVENTIONS FOR SCHIZOPHRENIA ACROSS THE LIFESPAN (OPAL) #2905

General
Experiments (0)
Shared Data
Publications (27)
Data Expected (19)
Associated Studies (1)

Collection Title	Collection Investigators	Collection Description
Collection Title:	OPTIMIZING AND PERSONALIZING INTERVENTIONS FOR SCHIZOPHRENIA ACROSS THE LIFESPAN (OPAL)
Collection Investigators:	Thomas Stroup
Collection Description:	- OVERALL The target population for this ALACRITY center is people diagnosed with schizophrenia, who commonly have impaired social and occupational functioning, experience persistent psychotic and mood symptoms, and are at risk for disability and premature death. We named this proposed center OPAL, after its goal of Optimizing and Personalizing interventions for people with schizophrenia Across the Lifespan. The goal of OPAL is to accelerate the adaptation, development and implementation of effective, personalized treatments in real-world settings. The specific aims of this center are as follows 1. Create an infrastructure that supports research that tests innovative ways to optimize treatments for people with schizophrenia throughout the lifespan and that accelerates the translation of clinical research on schizophrenia to routine practice settings. 2. Conduct exploratory and pilot projects that develop, adapt, and test innovative methods to personalize treatments for schizophrenia and to make them effective and readily deployable. 3. Train scientists who will conduct translational research on services and treatments for persons with schizophrenia. The three OPAL developmental projects address important representative problems that affect people diagnosed with schizophrenia throughout the course of illness. Project 1 addresses cognitive impairments, which have been detected during the prodromal period until late life and are a key contributor to functional impairments. The project examines ways to personalize cognitive remediation and make it more accessible. The project will examine the feasibility of delivering cognitive remediation in non-clinic settings and baseline testing to tailor the intervention to individual needs. Project 2 addresses the treatment of common chronic medical conditions that are associated with considerable morbidity and premature mortality in schizophrenia. The project adapts Critical Time Intervention CTI to the needs of individuals with schizophrenia who are hospitalized for ambulatory care sensitive conditions and examines its preliminary effectiveness. Project 3 focuses on psychotropic medications, which are vital but poorly deployed treatments for schizophrenia. The project examines the feasibility and effectiveness of using mobile health technology and Experience Sampling Methods ESM to optimize psycho pharmacologic regimens for individuals with first-episode psychosis. The OPAL Center will use common resources and methodologies to improve the implementation and personalization of treatments. As a complement to the quantitative data gathered in each project, we will use qualitative methods to get stakeholder input, particularly on techniques to maximize engagement in treatment, and to refine and adapt interventions for effective implementation in real-world settings.
Data Repository:	NIMH Data Archive
Permission Group:
Collection Creation Date:	04/24/2018
Collection Phase:	Funding Completed
Collection Sub-Phase:	Close Out
Blinded Clinical Trial:	No
Total Funded Amount:	$4,103,638.00
Subjects Shared:	100

{"values":[]}

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Funding Sources:

Funding Source Name	Funding Source URL
NIH - Extramural	None

Supporting Documentation:

Grant Information:

Project Number	Project Title	Start Date	End Date	Planned Enrollment	Actual Enrollment	Organization	Funds Obligated
P50MH115843-01	OPTIMIZING AND PERSONALIZING INTERVENTIONS FOR SCHIZOPHRENIA ACROSS THE LIFESPAN (OPAL)	04/01/2018	12/31/2021	5318	105	NEW YORK STATE PSYCHIATRIC INSTITUTE dba RESEARCH FOUNDATION FOR MENTAL HYGIENE, INC	$4,103,638.00

Clinical Trials:

Brief Summary	Status	Clinical Trial ID	Study ID	Principal Investigator	Start Date	End Date
This project will explore adaptations of treatments for schizophrenia, with the goal of optimizing their effectiveness in real-world clinical settings and readiness for broad deployment. Schizophrenia is associated with cognitive deficits that negatively impact essential areas of daily functioning. NY State Office of Mental Health (OMH) is the first and largest state system of care to implement a statewide program of cognitive remediation (CR), an evidence-based practice for improving cognition and aiding functional recovery. Through Cognitive Remediation to Promote Recovery (CR2PR), CR is now offered in outpatient programs, with plans to expand to more services and further adapt implementation to improve treatment outcomes. This project will work directly with OMH clinics and clinicians to build upon and improve current CR delivery methods. This project will study the impact of two adaptations. One focuses on increasing the accessibility of the program, which participants report is limited by the requirement of twice weekly attendance. This project will compare the feasibility and acceptability of delivering CR in either two clinic-based sessions (Clinic) or one clinic and one remote session (Hybrid) per week. Qualitative interviews will be conducted with stakeholders to explore the impact of the adaptation. The second adaptation is intended to improve personalization of CR by systematically accounting for individual differences in neurocognitive needs. Drawing upon convergent evidence for tailoring CR based on need for early auditory processing (EAP) training, this project examines whether integrating a measure of EAP into the current baseline assessment facilitates personalization of the menu of restorative computer-based exercises used in CR. Feasibility parameters and qualitative/quantitative data analyses of facilitators and barriers to Hybrid CR delivery will together inform further treatment refinement and the design of a larger effectiveness trial of Clinic versus Hybrid CR. This project will examine how EAP assessment is employed by practitioners to personalize the CR treatment plan and examine if EAP improvement is associated with cognitive outcomes in public practice CR settings. Finally cognitive, functional, and service use outcomes in Hybrid versus Clinic CR will be compared.	Completed	NCT03576976	7638	Alice Medalia, PhD	July 16, 2018	May 30, 2022
We are pursuing a pilot study to assess the feasibility and preliminary effectiveness of adapting a critical time intervention (CTI) approach for adults with schizophrenia who have been admitted for the inpatient treatment of ambulatory care sensitive conditions. These are common health conditions, such as chronic obstructive pulmonary disease or short-term complications from diabetes mellitus, in which appropriate ambulatory care prevents or reduces the need for inpatient treatment. A 2-arm pilot study will randomize 80 eligible inpatients to receive either: 1) treatment as usual (TAU) (N=20); or 2) CTI and TAU (N=40). Participants assigned to CTI will meet with a CTI care manger during their inpatient stay and over a 3-month period following hospital discharge. CTI care managers will assess and address patient needs and barriers to outpatient medical and mental health care and provide support and assistance with health and mental health care management. The primary outcome measure will be all-cause hospital readmissions at 7 and 30 days following discharge. Secondary outcomes will include follow-up with medical and mental health at 7 and 30 days following hospital discharge. Patients receiving CTI will also receive 6 and 12 week assessments to evaluate secondary outcomes including satisfaction with CTI services, psychiatric symptoms, community function, and involvement in medical care decisions.	Terminated	NCT03637296	7657	Thomas Smith, MD	May 1, 2019	December 31, 2020
This project will use a smartphone technology to improve medication prescribing for individuals with FEP. We will collect real-time symptom and functioning data via smartphones to provide prescribers and other clinical team members with clinically relevant and time-sensitive information that will inform and promote shared decision making (SDM) and personalized interventions. The result will be a time-sensitive, data-driven, collaborative process to optimize medication regimens in order to maximize benefits, minimize harms, and promote adherence.	Completed	NCT04248517	7900	Scott Stroup, MD, MPH	October 9, 2020	January 20, 2023

helpcenter.collection.general-tab

Collection - General Tab

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

Collection Title
Investigators
Collection Description
Collection Phase
Funding Source
Clinical Trials

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

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

Blinded Clinical Trial Status:

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

Funding Source

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

Supporting Documentation

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

Grant Information

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

Clinical Trials

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

Frequently Asked Questions

How does the NIMH Data Archive (NDA) determine which Permission Group data are submitted into?

During Collection creation, NDA staff determine the appropriate Permission Group based on the type of data to be submitted, the type of access that will be available to data access users, and the information provided by the Program Officer during grant award.
How do I know when a NDA Collection has been created?

When a Collection is created by NDA staff, an email notification will automatically be sent to the PI(s) of the grant(s) associated with the Collection to notify them.
Is a single grant number ever associated with more than one Collection?

The NDA system does not allow for a single grant to be associated with more than one Collection; therefore, a single grant will not be listed in the Grant Information section of a Collection for more than one Collection.
Why is there sometimes more than one grant included in a Collection?

In general, each Collection is associated with only one grant; however, multiple grants may be associated if the grant has multiple competing segments for the same grant number or if multiple different grants are all working on the same project and it makes sense to hold the data in one Collection (e.g., Cooperative Agreements).

Glossary

Administrator Privilege

A privilege provided to a user associated with an NDA Collection or NDA Study whereby that user can perform a full range of actions including providing privileges to other users.
Collection Owner

Generally, the Collection Owner is the contact PI listed on a grant. Only one NDA user is listed as the Collection owner. Most automated emails are primarily sent to the Collection Owner.
Collection Phase
The Collection Phase provides information on data submission as opposed to grant/project completion so while the Collection phase and grant/project phase may be closely related they are often different. Collection users with Administrative Privileges are encouraged to edit the Collection Phase. The Program Officer as listed in eRA (for NIH funded grants) may also edit this field. Changes must be saved by clicking the Save button at the bottom of the page. This field is sortable alphabetically in ascending or descending order. Collection Phase options include:
- Pre-Enrollment: A grant/project has started, but has not yet enrolled subjects.
- Enrolling: A grant/project has begun enrolling subjects. Data submission is likely ongoing at this point.
- Data Analysis: A grant/project has completed enrolling subjects and has completed all data submissions.
- Funding Completed: A grant/project has reached the project end date.
Collection Title

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

Provides the grant number(s) for the grant(s) associated with the Collection. The field is a hyperlink so clicking on the Grant number will direct the user to the grant information in the NIH Research Portfolio Online Reporting Tools (RePORT) page.
Supporting Documentation

Various documents and materials to enable efficient use of the data by investigators unfamiliar with the project and may include the research protocol, questionnaires, and study manuals.
NIH Research Initiative

NDA Collections may be organized by scientific similarity into NIH Research Initiatives, to facilitate query tool user experience. NIH Research Initiatives map to one or multiple Funding Opportunity Announcements.
Permission Group

Access to shared record-level data in NDA is provisioned at the level of a Permission Group. NDA Permission Groups consist of one or multiple NDA Collections that contain data with the same subject consents.
Planned Enrollment

Number of human subject participants to be enrolled in an NIH-funded clinical research study. The data is provided in competing applications and annual progress reports.
Actual Enrollment

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

A virtual container and organization structure for data and associated documentation from one grant or one large project/consortium. It contains tools for tracking data submission and allows investigators to define a wide array of other elements that provide context for the data, including all general information regarding the data and source project, experimental parameters used to collect any event-based data contained in the Collection, methods, and other supporting documentation. They also allow investigators to link underlying data to an NDA Study, defining populations and subpopulations specific to research aims.
Data Use Limitations

Data Use Limitations (DULs) describe the appropriate secondary use of a dataset and are based on the original informed consent of a research participant. NDA only accepts consent-based data use limitations defined by the NIH Office of Science Policy.
Total Subjects Shared

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

Contact NDA Help Desk

ID	Name	Created Date	Status	Type
No records found.

helpcenter.collection.experiments-tab

Collection - Experiments

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

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

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

Frequently Asked Questions

Can an Experiment be associated with more than one Collection?
Yes -see the “Copy” button in the bottom left when viewing an experiment. There are two actions that can be performed via this button:
1. Copy the experiment with intent for modifications.
2. Associate the experiment to the collection. No modifications can be made to the experiment.

Glossary

Experiment Status

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

The ID number automatically generated by NDA which must be included in the appropriate file when uploading data to link the Experiment Definition to the subject record.

Contact NDA Help Desk

Shared Data:

Title	Type	Number of Subjects
Anti-Psychotic Medication Side Effects Measure	Clinical Assessments	23
Beck Anxiety Inventory	Clinical Assessments	23
Beck Depression Inventory	Clinical Assessments	23
Brief Assessment of Cognition	Clinical Assessments	58
Client Satisfaction Questionnaire	Clinical Assessments	62
Columbia Suicide Severity Rating Scale	Clinical Assessments	23
Continuous Performance Test	Clinical Assessments	58
Heinrich's Quality of Life Scale	Clinical Assessments	62
Medicaid Claim Data	Clinical Assessments	15
Medication Adherence Rating Scale	Clinical Assessments	15
PROMIS: Patient Reported Outcome Measurement Information System	Clinical Assessments	100
Patient Attitudes and Beliefs Scale	Clinical Assessments	15
Research Subject	Clinical Assessments	100
Specific Levels Of Functioning Scale	Clinical Assessments	100
Structured Clinical Interview for the Positive and Negative Syndrome Scale	Clinical Assessments	99
Tone Matching Test	Clinical Assessments	58
Toronto Alexithymia Scale	Clinical Assessments	23
Treatment Satisfaction Questionnaire	Clinical Assessments	23
Wechsler Test of Adult Reading	Clinical Assessments	62

helpcenter.collection.shared-data-tab

Collection - Shared Data

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

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

Frequently Asked Questions

How will I know if another researcher uses data that I shared through the NIMH Data Archive (NDA)?

To see what data your project have submitted are being used by a study, simply go the Associated Studies tab of your collection. Alternatively, you may review an NDA Study Attribution Report available on the General tab.
Can I get a supplement to share data from a completed research project?

Often it becomes more difficult to organize and format data electronically after the project has been completed and the information needed to create a GUID may not be available; however, you may still contact a program staff member at the appropriate funding institution for more information.
Can I get a supplement to share data from a research project that is still ongoing?

Unlike completed projects where researchers may not have the information needed to create a GUID and/or where the effort needed to organize and format data becomes prohibitive, ongoing projects have more of an opportunity to overcome these challenges. Please contact a program staff member at the appropriate funding institution for more information.

Glossary

Data Structure

A defined organization and group of Data Elements to represent an electronic definition of a measure, assessment, questionnaire, or collection of data points. Data structures that have been defined in the NDA Data Dictionary are available at https://nda.nih.gov/general-query.html?q=query=data-structure
Data Type

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

The term 'Shared' generally means available to others; however, there are some slightly different meanings based on what is Shared. A Shared NDA Study is viewable and searchable publicly regardless of the user's role or whether the user has an NDA account. A Shared NDA Study does not necessarily mean that data used in the NDA Study have been shared as this is independently determined. Data are shared according the schedule defined in a Collection's Data Expected Tab and/or in accordance with data sharing expectations in the NDA Data Sharing Terms and Conditions. Additionally, Supporting Documentation uploaded to a Collection may be shared independent of whether data are shared.

Contact NDA Help Desk

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

Publications

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

PubMed ID	Study	Title	Journal	Authors	Date	Status
38741792	Create Study	Impact of Moderating Demographic Variables on a Health Intervention for People with Serious Mental Illness.	Research on social work practice	Cabassa, Leopoldo J; Stefancic, Ana; Chen, Jun-Hong; Park, Michael; Tuda, Daniela; Hawes, Mark R; Guo, Shenyang	November 1, 2022	Not Determined
38030420	Create Study	Hearing Loss in Older People With Schizophrenia: Audiologic Characteristics and Association With Psychosocial Functioning.	The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry	Saperstein, Alice M; Subhan, Bibi A; Golub, Justin S; Medalia, Alice	April 1, 2024	Not Determined
37778232	Create Study	Engagement of individuals with serious mental illness in outpatient mental health services and telehealth use during the COVID-19 pandemic.	Psychiatry research	Bareis, Natalie; Tepper, Miriam C; Wang, Rui; Tang, Fei; Olfson, Mark; Dixon, Lisa B; Kimhy, David; Wall, Melanie M; Medalia, Alice; Finnerty, Molly T; Anderson, Adrienne; Smith, Thomas E	November 1, 2023	Not Determined
37227841	Create Study	Self-stigma among people with serious mental illnesses: The use of focus groups to inform the development of a brief video intervention.	Psychiatric rehabilitation journal	Amsalem, Doron; Rogers, R Tyler; Stroup, T Scott; Dixon, Lisa; Pope, Leah G	September 1, 2023	Not Determined
37220910	Create Study	Factors influencing engagement in in-person and remotely delivered lifestyle interventions for young adults with serious mental illness: A qualitative study.	Early intervention in psychiatry	Browne, Julia; Naslund, John A; Salwen-Deremer, Jessica K; Sarcione, Carrie; Cabassa, Leopoldo J; Aschbrenner, Kelly A	January 1, 2024	Not Determined
36907004	Create Study	Feasibility and clinical utility of using the tone matching test for assessment of early auditory processing in schizophrenia.	Psychiatry research	Medalia, Alice; Saperstein, Alice; Javitt, Daniel C; Qian, Min; Meyler, Shanique; Styke, Sarah	May 1, 2023	Not Determined
36651116	Create Study	Community, Hospital, and Patient Factors Contributing to Ethnoracial Disparities in Follow-Up After Psychiatric Hospitalization.	Psychiatric services (Washington, D.C.)	Smith, Thomas E; Corbeil, Tom; Wall, Melanie M; Tang, Fei; Essock, Susan M; Frimpong, Eric; Goldman, Matthew L; Mascayano, Franco; Radigan, Marleen; Wang, Rui; Rodgers, Ian; Dixon, Lisa B; Olfson, Mark; Lewis-Fernández, Roberto	July 1, 2023	Not Determined
36592524	Create Study	Means of suicide among adults with schizophrenia across the life span.	Schizophrenia research	Bareis, Natalie; Olfson, Mark; Gerhard, Tobias; Rolin, Stephanie; Stroup, T Scott	January 1, 2023	Not Determined
36407687	Create Study	Transportation and other social needs as markers of mental health conditions.	Journal of transport & health	Garg, Rachel; Muhammad, Serena N; Cabassa, Leopoldo J; McQueen, Amy; Verdecias, Niko; Greer, Regina; Kreuter, Matthew W	June 1, 2022	Not Determined
36331539	Create Study	Development of the First Episode Digital Monitoring mHealth Intervention for People With Early Psychosis: Qualitative Interview Study With Clinicians.	JMIR mental health	Stefancic, Ana; Rogers, R Tyler; Styke, Sarah; Xu, Xiaoyan; Buchsbaum, Richard; Nossel, Ilana; Cabassa, Leopoldo J; Stroup, T Scott; Kimhy, David	November 4, 2022	Not Determined
36037743	Create Study	Assessing metamotivation in schizophrenia: A pilot study of the Brief Regulation of Motivation Scale (BRoMS).	Psychiatry research	Lynch, David A; Brown, Marie; Saperstein, Alice; Stefancic, Ana; Medalia, Alice	November 1, 2022	Not Determined
35501204	Create Study	Disparities in technology literacy and access negatively impact cognitive remediation scalability.	Schizophrenia research	Arlia, Christina; Saperstein, Alice M; Meyler, Shanique; Styke, Sarah; Medalia, Alice	May 1, 2022	Not Determined
35142705	Create Study	Underdetection of pre-existing HIV/AIDS during psychiatric hospitalizations.	AIDS (London, England)	Mangurian, Christina; Dahiya, Priya; Goldman, Matthew L; Corbeil, Tom; Wall, Melanie M; Essock, Susan M; Dixon, Lisa B; Tang, Fei; Frimpong, Eric; Mascayano, Franco; Radigan, Marleen; Wang, Rui; Olfson, Mark; Smith, Thomas E	June 1, 2022	Not Determined
34981276	Create Study	Feasibility and Utility of Different Approaches to Violence Risk Assessment for Young Adults Receiving Treatment for Early Psychosis.	Community mental health journal	Rolin, Stephanie A; Scodes, Jennifer; Dambreville, Renald; Nossel, Ilana R; Bello, Iruma; Wall, Melanie M; Scott Stroup, T; Dixon, Lisa B; Appelbaum, Paul S	August 1, 2022	Not Determined
34587788	Create Study	Variation in Psychotropic Medication Prescription for Adults With Schizophrenia in the United States.	Psychiatric services (Washington, D.C.)	Bareis, Natalie; Olfson, Mark; Wall, Melanie; Stroup, T Scott	May 1, 2022	Not Determined
34325963	Create Study	Metamotivation in people diagnosed with schizophrenia: A conceptual introduction and qualitative study.	Schizophrenia research	Hansen, Marie C; Lynch, David A; Stefancic, Ana; Medalia, Alice	May 1, 2022	Not Determined
34157859	Create Study	The Effectiveness of Discharge Planning for Psychiatric Inpatients With Varying Levels of Preadmission Engagement in Care.	Psychiatric services (Washington, D.C.)	Smith, Thomas E; Haselden, Morgan; Corbeil, Tom; Wall, Melanie M; Tang, Fei; Essock, Susan M; Frimpong, Eric; Goldman, Matthew L; Mascayano, Franco; Radigan, Marleen; Schneider, Matthew; Wang, Rui; Rodgers, Ian; Dixon, Lisa B; Olfson, Mark	February 1, 2022	Not Determined
34037667	Create Study	Suicide Risk in Medicare Patients With Schizophrenia Across the Life Span.	JAMA psychiatry	Olfson, Mark; Stroup, T Scott; Huang, Cecilia; Wall, Melanie M; Crystal, Stephen; Gerhard, Tobias	August 1, 2021	Not Determined
33962354	Create Study	Feasibility and acceptability of remotely accessed cognitive remediation for schizophrenia in public health settings.	Psychiatry research	Medalia, Alice; Saperstein, Alice M; Stefancic, Ana; Meyler, Shanique; Styke, Sarah; Qian, Min; Liu, Jun; Cabassa, Leopoldo J	July 1, 2021	Not Determined
33957769	Create Study	Telehealth Acceptability and Feasibility Among People Served in a Community Behavioral Health System During the COVID-19 Pandemic.	Psychiatric services (Washington, D.C.)	Tse, Jeanie; LaStella, Drew; Chow, Elisa; Kingman, Emily; Pearlman, Shoshannah; Valeri, Linda; Wang, Hao; Dixon, Lisa B	June 1, 2021	Not Determined
33887955	Create Study	Unmet Opportunity: Intensive Care Transition Intervention for Individuals With Serious Medical-Psychiatric Illnesses.	Psychiatric services (Washington, D.C.)	Smith, Thomas E; Marino, Leslie A; Olfson, Mark	July 1, 2021	Not Determined
33887517	Create Study	Client, clinician, and administrator factors associated with the successful acceptance of a telehealth comprehensive recovery service: A mixed methods study.	Psychiatry research	Lynch, David A; Stefancic, Ana; Cabassa, Leopoldo J; Medalia, Alice	June 1, 2021	Not Determined
33770627	Create Study	Predicting response to cognitive training for schizophrenia using results from two studies with different outcomes.	Schizophrenia research	Saperstein, Alice M; Choi, C Jean; Jahshan, Carol; Lynch, David A; Wall, Melanie; Green, Michael F; Medalia, Alice	May 1, 2021	Not Determined
33688938	Create Study	Age-Specific Prevalence and Incidence of Dementia Diagnoses Among Older US Adults With Schizophrenia.	JAMA psychiatry	Stroup, T Scott; Olfson, Mark; Huang, Cecilia; Wall, Melanie M; Goldberg, Terry; Devanand, Davangere P; Gerhard, Tobias	June 1, 2021	Not Determined
33416746	Create Study	Ideal Cardiovascular Health in Racially and Ethnically Diverse People with Serious Mental Illness.	Journal of health care for the poor and underserved	Hawes, Mark R; Roth, Kimberly B; Wang, Xiaoyan; Stefancic, Ana; Weatherly, Christopher; Cabassa, Leopoldo J	January 1, 2020	Not Determined
32495094	Create Study	Age and Incidence of Dementia Diagnosis.	Journal of general internal medicine	Olfson, Mark; Stroup, Thomas Scott; Huang, Cecilia; Wall, Melanie M; Gerhard, Tobias	July 1, 2021	Not Determined
32164706	Create Study	Reframing implementation science to address inequities in healthcare delivery.	BMC health services research	Baumann, Ana A; Cabassa, Leopoldo J	March 12, 2020	Not Determined

helpcenter.collection.publications-tab

Collection - Publications

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

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

Frequently Asked Questions

How can I determine if a publication is relevant?

Publications are considered relevant to a collection when the data shared is directly related to the project or collection.
Where does the NDA get the publications?

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

Glossary

Create Study

A link to the Create an NDA Study page that can be clicked to start creating an NDA Study with information such as the title, journal and authors automatically populated.
Not Determined Publication

Indicates that the publication has not yet been reviewed and/or marked as Relevant or Not Relevant so it has not been determined whether an NDA Study is expected.
Not Relevant Publication

A publication that is not based on data related to the aims of the grant/project associated with the Collection or not based on any data such as a review article and, therefore, an NDA Study is not expected to be created.
PubMed

PubMed provides citation information for biomedical and life sciences publications and is managed by the U.S. National Institutes of Health's National Library of Medicine.
PubMed ID

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

A publication that is based on data related to the aims of the grant/project associated with the Collection and, therefore, an NDA Study is expected to be created.

Contact NDA Help Desk

Data Expected List: Mandatory Data Structures

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

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

Data Expected	Targeted Enrollment	Initial Submission	Subjects Submitted	Initial Share	Subjects Shared	Status
Research Subject and Pedigree	120	01/15/2019	100	05/15/2019	100	Approved

To create your project's Data Expected list, use the "+New Data Expected" to add or request existing structures and to request new Data Structures that are not in the NDA Data Dictionary.

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

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

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

Please visit the Completing Your Data Expected Tutorial for more information.

Data Expected List: Data Structures per Research Aims

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

Data Expected	Targeted Enrollment	Initial Submission	Subjects Submitted	Initial Share	Subjects Shared	Status
Quality of Life Assessment	60	01/15/2019	62	05/15/2019	62	Approved
Positive and Negative Syndrome Scale (PANSS)	120	01/15/2019	99	05/15/2019	99	Approved
Wechsler Test of Adult Reading	60	01/15/2019	62	05/15/2019	62	Approved
Brief Assessment of Cognition	60	01/15/2019	58	05/15/2019	58	Approved
Beck Depression Inventory	54	01/15/2021	23	05/15/2021	23	Approved
PROMIS: Patient Reported Outcome Measurement Information System	120	01/15/2019	100	05/15/2019	100	Approved
Beck Anxiety Inventory	54	01/15/2021	23	05/15/2021	23	Approved
Continuous Performance Test	60	01/15/2019	58	05/15/2019	58	Approved
Client Satisfaction Questionnaire	120	01/15/2019	62	05/15/2019	62	Approved
Specific Levels of Functioning Scale	120	01/15/2019	100	05/15/2019	100	Approved
Tone Matching Test	60	01/15/2019	58	05/15/2019	58	Approved
Toronto Alexithymia Scale	54	01/15/2021	23	05/15/2021	23	Approved
Medication Adherence Rating Scale	60	01/15/2020	15	05/15/2020	15	Approved
C2905 - Treatment Satisfaction Questionnaire	60	01/15/2021	23	05/15/2021	23	Approved
C2905 - Medicaid Claim data	15	01/15/2021	15	05/15/2021	15	Approved
Patient Attitudes and Beliefs Scale	60	01/15/2020	15	05/15/2020	15	Approved
C2905 - Anti-Psychotic Medication Side Effects Measure	60	01/15/2021	23	05/15/2021	23	Approved
Columbia Suicide Severity Rating Scale	54	01/15/2021	23	05/15/2021	23	Approved

Structure not yet defined

No Status history for this Data Expected has been recorded yet

helpcenter.collection.data-expected-tab

Collection - Data Expected

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

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

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

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

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

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

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

Frequently Asked Questions

What is an NDA Data Structure?

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

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

Glossary

Analyzed Data

Data specific to the primary aims of the research being conducted (e.g. outcome measures, other dependent variables, observations, laboratory results, analyzed images, volumetric data, etc.) including processed images.
Data Item

Items listed on the Data Expected list in the Collection which may be an individual and discrete Data Structure, Data Structure Category, or Data Structure Group.
Data Structure

A defined organization and group of Data Elements to represent an electronic definition of a measure, assessment, questionnaire, or collection of data points. Data structures that have been defined in the NDA Data Dictionary are available at https://nda.nih.gov/general-query.html?q=query=data-structure
Data Structure Category

An NDA term describing the affiliation of a Data Structure to a Category, which may be disease/disorder or diagnosis related (Depression, ADHD, Psychosis), specific to data type (MRI, eye tracking, omics), or type of data (physical exam, IQ).
Data Structure Group

A Data Item listed on the Data Expected tab of a Collection that indicates a group of Data Structures (e.g., ADOS or SCID) for which data may be submitted instead of a specific Data Structure identified by version, module, edition, etc. For example, the ADOS Data Structure Category includes every ADOS Data Structure such as ADOS Module 1, ADOS Module 2, ADOS Module 1 - 2nd Edition, etc. The SCID Data Structure Group includes every SCID Data Structure such as SCID Mania, SCID V Mania, SCID PTSD, SCID-V Diagnosis, and more.
Evaluated Data

A new Data Structure category, Evaluated Data is analyzed data resulting from the use of computational pipelines in the Cloud and can be uploaded directly back to a miNDAR database. Evaluated Data is expected to be listed as a Data Item in the Collection's Data Expected Tab.
Imaging Data

Imaging+ is an NDA term which encompasses all imaging related data including, but not limited to, images (DTI, MRI, PET, Structural, Spectroscopy, etc.) as well as neurosignal data (EEG, fMRI, MEG, EGG, eye tracking, etc.) and Evaluated Data.
Initial Share Date

Initial Submission and Initial Share dates should be populated according to the NDA Data Sharing Terms and Conditions. Any modifications to these will go through the approval processes outlined above. Data will be shared with authorized users upon publication (via an NDA Study) or 1-2 years after the grant end date specified on the first Notice of Award, as defined in the applicable Data Sharing Terms and Conditions.
Initial Submission Date

Initial Submission and Initial Share dates should be populated according to these NDA Data Sharing Terms and Conditions. Any modifications to these will go through the approval processes outlined above. Data for all subjects is not expected on the Initial Submission Date and modifications may be made as necessary based on the project's conduct.
Research Subject and Pedigree

An NDA created Data Structure used to convey basic information about the subject such as demographics, pedigree (links family GUIDs), diagnosis/phenotype, and sample location that are critical to allow for easier querying of shared data.
Submission Cycle

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

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

Contact NDA Help Desk

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

Associated Studies

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

Study NameFilter by Study Name	AbstractFilter by Abstract	Collection/Study SubjectsFilter by Collection/Study Subjects	Data UsageFilter by Data Usage	StateFilter by State
The Frequency of Symptom-Based Phenotypes of Mental Disorders is Long-Tailed	The heterogeneity of symptoms among individuals diagnosed with the same mental disorder has been blamed to hinder research in mental health and the development of effective treatments. Although widely acknowledged as problematic, the characteristics of this heterogeneity are largely unknown. We assessed the frequency of symptom phenotypes across a variety of clinical and non-clinical populations and found a consistent, long-tailed distribution. This distribution represents a mixture of a few very commonly expressed phenotypes and the sum of many, each only rarely displayed ones. As a consequence, the non-normality of this distribution induces a systematic bias, affecting all research and treatments relying on a symptom-based definition of mental disorders.	70/5743	Secondary Analysis	Shared

* Data not on individual level

helpcenter.collection.associated-studies-tab

Collection - Associated Studies

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

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

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

Frequently Asked Questions

How do I associate a study to my collection?

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

Glossary

Associated Studies Tab

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

Contact NDA Help Desk

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Glossary