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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

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Leveraging rare genetic etiologies to advance knowledge and treatment of neuropsychiatric disorders #3227

General
Experiments (0)
Shared Data
Publications (28)
Data Expected (2)
Associated Studies (0)

Collection Title	Collection Investigators	Collection Description
Collection Title:	Leveraging rare genetic etiologies to advance knowledge and treatment of neuropsychiatric disorders
Collection Investigators:	Christa Martin
Collection Description:	Neuropsychiatric disorders NPD, such as schizophrenia, bipolar disorder, and autism are behaviorally-defined and etiologically-heterogeneous conditions with a wide range of severity and outcomes. For cancer and other common diseases, the study of rare genetic disorders has illuminated key pathophysiological mechanisms, resulting in significant treatment advances. We hypothesize that this strategy can be successfully applied to NPD. New genomic technologies have led to the discovery of hundreds of rare genetic NPD due to copy number CNVs and single gene nucleotide variants SNVs of large effect size. However, detailed neuropsychiatric profiles have not been established for most of these conditions, due in part to difficulty recruiting adequate cohort sizes to power statistical analyses. We will capitalize on large NPD clinical populations at Geisinger, the University of Washington, and Washington University in St. Louis to recruit individuals with rare genetic disorders for this study. We will also examine the influence of additional contributors throughout the genome to the variable expressivity of neuropsychiatric symptoms in these disorders. This study will systematically examine these aspects of rare genetic NPD through the following aims 1 Employ a highly cost-effective, genetics-first strategy to achieve baseline characterization of a large cohort with genetic NPD etiologies. Every year, as part of psychiatric, developmental, and behavioral healthcare, valuable genotype and phenotype data are generated from individuals with rare genetic NPD. We will harmonize core assessment batteries used in clinical care to leverage this high-quality data for broad data sharing and analyses on 1,000 probands, accelerating discovery and greatly reducing the research cost of multidimensional phenotyping. 2 Describe detailed phenotypic signatures in selected rare genetic NPD, including the impact of family background on variable expressivity. We will characterize quantitative neuropsychiatric traits for selected rare genetic NPD initially 1q21.1 and 15q13.3 CNVs and CHD8 SNVs. All three disorders have shown genome-wide significance for increased risk of neuropsychiatric phenotypes, including psychosis, mood disorders, and autism. We will assess behavioral, psychiatric, and cognitive traits in 250 probands with these rare genetic NPD and their first-degree family members to explore the impact of family background on variable expressivity of neuropsychiatric symptoms. 3 Assess the contributions of common and secondary rare genomic variants to variable expressivity in rare genetic NPD. Through two sub-aims, we will explore the impact of common polygenic risk scores and rare second hits genomic contributors on risk or resilience for neuropsychiatric symptoms. Analyzing data collected through Aims 1 and 2, in addition to a broader exploration of genomic and electronic health record data from 250,000 individuals in Geisinger's My Code cohort, we will demonstrate how different genomic background contributors lead to clinical heterogeneity in individuals with rare genetic NPD. These studies may eventually inform individual-level prognoses for neuropsychiatric outcomes.
Data Repository:	NIMH Data Archive
Permission Group:
Collection Creation Date:	07/09/2019
Data Use Limitations:	Limited to General Research Use (GRU) where use of the data is limited only by the terms of the Data Use Certification. Limited to IRB Approval Required (IRB) where requestor must provide documentation of local IRB approval. Limited to Publication Required (PUB) where requestor agrees to make results of studies using the data available to the larger scientific community.
NIH Research Initiative:	NIMH Repository & Genomics Resource (NRGR)
Collection Phase:	Funding Completed
Collection Sub-Phase:	Close Out
Blinded Clinical Trial:	No
Total Funded Amount:	$3,653,927.00
Subjects Shared:	510

{"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
U01MH119705-01	Leveraging rare genetic etiologies to advance knowledge and treatment of neuropsychiatric disorders	06/10/2019	03/31/2024	1750	745	GEISINGER CLINIC	$3,653,927.00

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Collection - General Tab

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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.
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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.
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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.
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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:
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ID	Name	Created Date	Status	Type
No records found.

helpcenter.collection.experiments-tab

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Shared Data:

Title	Type	Number of Subjects
Genomics Subject	Genomics	510
Research Subject	Clinical Assessments	318

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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.

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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.
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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.
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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
39406744	Create Study	A genome-first study of sex chromosome aneuploidies provides evidence of Y chromosome dosage effects on autism risk.	Nature communications	Berry, Alexander S F; Finucane, Brenda M; Myers, Scott M; Walsh, Lauren K; Seibert, John M; Martin, Christa Lese; Ledbetter, David H; Oetjens, Matthew T	October 15, 2024	Not Determined
39257968	Create Study	MED13L-related disorder characterized by severe motor speech impairment.	Research square	Mitchel, Marissa Weyer; Turner, Stefanie; Walsh, Lauren K; Torene, Rebecca I; Myers, Scott M; Taylor, Cora M	August 28, 2024	Not Determined
38809474	Create Study	Predicting Intervention Use in Youth with Rare Variants in Autism-Associated Genes.	Journal of autism and developmental disorders	Benavidez, Hannah R; Johansson, Margaret; Jones, Elizabeth; Rea, Hannah; Kurtz-Nelson, Evangeline C; Miles, Conor; Whiting, Alana; Eayrs, Curtis; Earl, Rachel; Bernier, Raphael A; Eichler, Evan E; Neuhaus, Emily	May 29, 2024	Not Determined
38657658	Create Study	Association of behavioural and social-communicative profiles in children with 16p11.2 copy number variants: a multi-site study.	Journal of intellectual disability research : JIDR	Verbesselt, J; Walsh, L K; Mitchel, M W; Taylor, C M; Finucane, B M; Breckpot, J; Zink, I; Swillen, A	August 1, 2024	Not Determined
38622540	Create Study	Shared and divergent mental health characteristics of ADNP-, CHD8- and DYRK1A-related neurodevelopmental conditions.	Journal of neurodevelopmental disorders	Neuhaus, Emily; Rea, Hannah; Jones, Elizabeth; Benavidez, Hannah; Miles, Conor; Whiting, Alana; Johansson, Margaret; Eayrs, Curtis; Kurtz-Nelson, Evangeline C; Earl, Rachel; Bernier, Raphael A; Eichler, Evan E	April 15, 2024	Not Determined
37987233	Create Study	Social motivation by self- and caregiver-report: Reporter concordance and social correlates among autistic and neurotypical youth.	Autism research : official journal of the International Society for Autism Research	Neuhaus, Emily; Bernier, Raphael A; Webb, Sara Jane	January 1, 2024	Not Determined
36924980	Create Study	Genetic Ablation of GIGYF1, Associated With Autism, Causes Behavioral and Neurodevelopmental Defects in Zebrafish and Mice.	Biological psychiatry	Ding, Zijiao; Huang, Guiyang; Wang, Tianyun; Duan, Weicheng; Li, Hua; Wang, Yirong; Jia, Huiting; Yang, Ziqian; Wang, Kang; Chu, Xufeng; Kurtz-Nelson, Evangeline C; Ahlers, Kaitlyn; Earl, Rachel K; Han, Yunyun; Feliciano, Pamela; Chung, Wendy K; Eichler, Evan E; Jiang, Man; Xiong, Bo	November 15, 2023	Not Determined
36877506	Create Study	Diagnostic Yield of Exome Sequencing in Cerebral Palsy and Implications for Genetic Testing Guidelines: A Systematic Review and Meta-analysis.	JAMA pediatrics	Gonzalez-Mantilla, Pedro J; Hu, Yirui; Myers, Scott M; Finucane, Brenda M; Ledbetter, David H; Martin, Christa L; Moreno-De-Luca, Andres	May 1, 2023	Not Determined
36757539	Create Study	The Social Shapes Test as a Self-Administered, Online Measure of Social Intelligence: Two Studies with Typically Developing Adults and Adults with Autism Spectrum Disorder.	Journal of autism and developmental disorders	Brown, Matt I; Heck, Patrick R; Chabris, Christopher F	May 1, 2024	Not Determined
36672911	Create Study	Gathering the Stakeholder''s Perspective: Experiences and Opportunities in Rare Genetic Disease Research.	Genes	White, Lauren K; Crowley, T Blaine; Finucane, Brenda; McClellan, Emily J; Donoghue, Sarah; Garcia-Minaur, Sixto; Repetto, Gabriela M; Fischer, Matthias; Jacquemont, Sebastien; Gur, Raquel E; Maillard, Anne M; Donald, Kirsten A; Bassett, Anne S; Swillen, Ann; McDonald-McGinn, Donna M	January 7, 2023	Not Determined
36648468	Create Study	Association of Supernumerary Sex Chromosome Aneuploidies With Venous Thromboembolism.	JAMA	Berry, Alexander S F; Finucane, Brenda M; Myers, Scott M; Abril, Angela; Kirchner, H Lester; Ledbetter, David H; Martin, Christa Lese; Oetjens, Matthew T	January 17, 2023	Not Determined
36609147	Create Study	Phenotypic shift in copy number variants: Evidence in 16p11.2 duplication syndrome.	Genetics in medicine : official journal of the American College of Medical Genetics	Taylor, Cora M; Finucane, Brenda M; Moreno-De-Luca, Andres; Walsh, Lauren K; Martin, Christa Lese; Ledbetter, David H	January 1, 2023	Not Determined
36475376	Create Study	Prevalence and Penetrance of Rare Pathogenic Variants in Neurodevelopmental Psychiatric Genes in a Health Care System Population.	The American journal of psychiatry	Shimelis, Hermela; Oetjens, Matthew T; Walsh, Lauren K; Wain, Karen E; Znidarsic, Masa; Myers, Scott M; Finucane, Brenda M; Ledbetter, David H; Martin, Christa Lese	January 1, 2023	Not Determined
36350923	Create Study	Integrated gene analyses of de novo variants from 46,612 trios with autism and developmental disorders.	Proceedings of the National Academy of Sciences of the United States of America	Wang, Tianyun; Kim, Chang N; Bakken, Trygve E; Gillentine, Madelyn A; Henning, Barbara; Mao, Yafei; Gilissen, Christian; SPARK Consortium; Nowakowski, Tomasz J; Eichler, Evan E	November 15, 2022	Not Determined
35935096	Create Study	Using game-like animations of geometric shapes to simulate social interactions: An evaluation of group score differences.	International journal of selection and assessment	Brown, Matt I; Speer, Andrew B; Tenbrink, Andrew P; Chabris, Christopher F	March 1, 2022	Not Determined
35410794	Create Study	Rare variants and the oligogenic architecture of autism.	Trends in genetics : TIG	Wang, Tianyun; Zhao, Peiyao A; Eichler, Evan E	September 1, 2022	Not Determined
35236119	Create Study	Genes To Mental Health (G2MH): A Framework to Map the Combined Effects of Rare and Common Variants on Dimensions of Cognition and Psychopathology.	The American journal of psychiatry	Jacquemont, Sébastien; Huguet, Guillaume; Klein, Marieke; Chawner, Samuel J R A; Donald, Kirsten A; van den Bree, Marianne B M; Sebat, Jonathan; Ledbetter, David H; Constantino, John N; Earl, Rachel K; McDonald-McGinn, Donna M; van Amelsvoort, Therese; Swillen, Ann; O'Donnell-Luria, Anne H; Glahn, David C; Almasy, Laura; Eichler, Evan E; Scherer, Stephen W; Robinson, Elise; Bassett, Anne S; Martin, Christa Lese; Finucane, Brenda; Vorstman, Jacob A S; Bearden, Carrie E; Gur, Raquel E; Genes to Mental Health Network	March 1, 2022	Not Determined
35232796	Create Study	Consolidation of the clinical and genetic definition of a SOX4-related neurodevelopmental syndrome.	Journal of medical genetics	Angelozzi, Marco; Karvande, Anirudha; Molin, Arnaud N; Ritter, Alyssa L; Leonard, Jacqueline M M; Savatt, Juliann M; Douglass, Kristen; Myers, Scott M; Grippa, Mina; Tolchin, Dara; Zackai, Elaine; Donoghue, Sarah; Hurst, Anna C E; Descartes, Maria; Smith, Kirstin; Velasco, Danita; Schmanski, Andrew; Crunk, Amy; Tokita, Mari J; de Lange, Iris M; van Gassen, Koen; Robinson, Hannah; Guegan, Katie; Suri, Mohnish; Patel, Chirag; Bournez, Marie; Faivre, Laurence; Tran-Mau-Them, Frédéric; Baker, Janice; Fabie, Noelle; Weaver, K; Shillington, Amelle; Hopkin, Robert J; Barge-Schaapveld, Daniela Q C M; Ruivenkamp, Claudia Al; Bökenkamp, Regina; Vergano, Samantha; Seco Moro, Maria Noelia; Díaz de Bustamante, Aranzazu; Misra, Vinod K; Kennelly, Kelly; Rogers, Caleb; Friedman, Jennifer; Wigby, Kristen M; Lenberg, Jerica; Graziano, Claudio; Ahrens-Nicklas, Rebecca C; Lefebvre, Veronique	November 1, 2022	Not Determined
35191118	Create Study	The COVID-19 pandemic''s impact on worry and medical disruptions reported by individuals with chromosome 22q11.2 copy number variants and their caregivers.	Journal of intellectual disability research : JIDR	White, L K; Crowley, T B; Finucane, B; Garcia-Minaur, S; Repetto, G M; van den Bree, M; Fischer, M; Jacquemont, S; Barzilay, R; Maillard, A M; Donald, K A; Gur, R E; Bassett, A S; Swillen, A; McDonald-McGinn, D M	April 1, 2022	Not Determined
34906480	Create Study	Medical manifestations and health care utilization among adult MyCode participants with neurodevelopmental psychiatric copy number variants.	Genetics in medicine : official journal of the American College of Medical Genetics	Finucane, Brenda; Oetjens, Matthew T; Johns, Alicia; Myers, Scott M; Fisher, Ciaran; Habegger, Lukas; Maxwell, Evan K; Reid, Jeffrey G; Ledbetter, David H; Kirchner, H Lester; Martin, Christa Lese	March 1, 2022	Not Determined
34342000	Create Study	Harnessing rare variants in neuropsychiatric and neurodevelopment disorders-a Keystone Symposia report.	Annals of the New York Academy of Sciences	Cable, Jennifer; Purcell, Ryan H; Robinson, Elise; Vorstman, Jacob A S; Chung, Wendy K; Constantino, John N; Sanders, Stephan J; Sahin, Mustafa; Dolmetsch, Ricardo E; Shah, Bina Maniar; Thurm, Audrey; Martin, Christa L; Bearden, Carrie E; Mulle, Jennifer G	December 1, 2021	Not Determined
33773394	Create Study	All for one and one for all: heterogeneity of genetic etiologies in neurodevelopmental psychiatric disorders.	Current opinion in genetics & development	Moreno-De-Luca, Daniel; Martin, Christa Lese	June 1, 2021	Not Determined
33681094	Create Study	Genetic Testing in Neurodevelopmental Disorders.	Frontiers in pediatrics	Savatt, Juliann M; Myers, Scott M	January 1, 2021	Not Determined
33678806	Create Study	Attributing social meaning to animated shapes: A new experimental study of apparent behavior.	The American journal of psychology	Ratajska, Adrianna; Brown, Matt I; Chabris, Christopher F	January 1, 2020	Not Determined
33434711	Create Study	Diagnostic genetic testing for neurodevelopmental psychiatric disorders: closing the gap between recommendation and clinical implementation.	Current opinion in genetics & development	Finucane, Brenda M; Ledbetter, David H; Vorstman, Jacob As	June 1, 2021	Not Determined
32697297	Create Study	Identification of Neuropsychiatric Copy Number Variants in a Health Care System Population.	JAMA psychiatry	Martin, Christa Lese; Wain, Karen E; Oetjens, Matthew T; Tolwinski, Kasia; Palen, Emily; Hare-Harris, Abby; Habegger, Lukas; Maxwell, Evan K; Reid, Jeffrey G; Walsh, Lauren Kasparson; Myers, Scott M; Ledbetter, David H	December 1, 2020	Not Determined
32544666	Create Study	Long overdue: including adults with brain disorders in precision health initiatives.	Current opinion in genetics & development	Finucane, Brenda M; Myers, Scott M; Martin, Christa L; Ledbetter, David H	December 1, 2020	Not Determined
32359473	Create Study	Insufficient Evidence for "Autism-Specific" Genes.	American journal of human genetics	Myers, Scott M; Challman, Thomas D; Bernier, Raphael; Bourgeron, Thomas; Chung, Wendy K; Constantino, John N; Eichler, Evan E; Jacquemont, Sebastien; Miller, David T; Mitchell, Kevin J; Zoghbi, Huda Y; Martin, Christa Lese; Ledbetter, David H	May 7, 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	1	01/15/2020	1,590	05/15/2020	510	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
Genomics/omics	1	01/15/2023	0	05/15/2023	0	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
No records found.

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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