NIMH Data Archive - Data

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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

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Early Biomarkers of Autism Spectrum Disorders in infants with Tuberous Sclerosis #2008

General
Experiments (5)
Shared Data
Publications (92)
Data Expected (13)
Associated Studies (6)

Collection Title	Collection Investigators	Collection Description
Collection Title:	Early Biomarkers of Autism Spectrum Disorders in infants with Tuberous Sclerosis
Collection Investigators:	Mustafa Sahin
Collection Description:	Autism Spectrum Disorders (ASD) has complex and varying etiologies. A lack of understanding regarding the underlying molecular and cellular mechanisms is a key barrier in finding effective treatments. Single-gene disorders that have a high prevalence of ASD provide unique opportunities to investigate the underlying biology and test treatments for autism. Tuberous Sclerosis Complex (TSC) is a genetic disorder in which approximately 50% of individuals are also affected with ASD. Importantly, TSC can be diagnosed before or at the time of birth, and thus infants with TSC allow us to observe prospectively the natural history of ASD and develop better tools for early detection of autism. On a molecular level, TSC disease manifestations result from the aberrant hyperactivity of mTOR that is caused by mutation in one of two TSC genes. Pharmacologic mTOR inhibition to correct the cellular defects in TSC is no longer a hope for the future, but rather an exciting reality with proven efficacy against various TSC disease manifestations. To determine the potential benefit these agents may have in treating or preventing ASD, it is imperative to identify early markers of autism in infants with TSC, so as to not put young children who will not develop ASD at unnecessary risk. Accumulating clinical and basic science evidence suggests that aberrant white matter connectivity represents a rational candidate as a biomarker in TSC. TSC mouse models demonstrate defects in the specification, guidance, and myelination of axons. More importantly, several groups have reported abnormalities in the normal-appearing white matter of TSC patients that can be identified by MR imaging, and loss of white matter microstructural integrity is associated with neurological and cognitive deficits. Furthermore, there is preliminary data indicating that white matter integrity can be improved by treatment with mTOR inhibitors in both animal models and in TSC patients. Taken together, these findings lead to the hypothesis that longitudinal assessment of white matter integrity and neural connectivity in TSC infants, through advanced MRI and EEG analysis, can be used as an early biomarker of subsequent ASD in this genetic disease. This proposal aims to establish a consortium of five Children's Hospitals that are geographically-distributed throughout the US to recruit TSC patients in the first year of life to test this hypothesis. State of the art imaging with 3 Tesla MRI scanners, advanced EEG technology, validated neurodevelopmental assessment tools, genetic analysis, and standardized clinical measures through age 36 months will be utilized. The clinical consortium will be supported by a centralized Data Coordinating Center with experience in another rare disease (neurofibromatosis). Collaboration with Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs at each center will provide additional interdisciplinary research training and education expertise in ASD and TSC. As a result of the research outlined in this proposal, better understanding of brain connectivity and its relationship to ASD in TSC will pave the way for new interventions for this and related causes of autism.
Data Repository:	NIMH Data Archive
Permission Group:
Collection Creation Date:	10/22/2012
NIH Research Initiative:	Autism Centers of Excellence (ACE)
Collection Phase:	Funding Completed
Collection Sub-Phase:	Close Out
Blinded Clinical Trial:	No
Total Funded Amount:	$13,349,935.00
Subjects Shared:	164

{"values":[]}

{"values":[["DTI",43],["MRI",43]]}

{"values":[["Not Defined",268]]}

Loading Chart...

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
U01NS082320-01	Early Biomarkers of Autism Spectrum Disorders in infants with Tuberous Sclerosis	09/01/2012	08/31/2019	165	146	BOSTON CHILDRENS HOSPITAL	$13,349,935.00

Clinical Trials:

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
112	UCLA-Cincinnati EEG	11/18/2013	Approved	EEG
117	Boston EEGs	01/09/2014	Approved	EEG
118	Houston EEGs	01/09/2014	Approved	EEG
119	Birmingham	01/13/2014	Approved	EEG
120	Cincinnati EEGs	01/13/2014	Approved	EEG

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.

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Shared Data:

Title	Type	Number of Subjects
ACE Family Medical History	Clinical Assessments	160
ACE Subject Medical History	Clinical Assessments	160
ACE Subject Physical Exam	Clinical Assessments	160
Child Behavior Checklist (CBCL) 1-5	Clinical Assessments	146
Classification of Seizures	Clinical Assessments	160
Demographics	Clinical Assessments	161
EEG Subject Files	Imaging	162
Early Social Communication Scale (ESCS)	Clinical Assessments	151
Image	Imaging	135
Interval Medical History	Clinical Assessments	155
Mullen Scales of Early Learning	Clinical Assessments	158
Preschool Language Scales Fifth edition (PLS-5)	Clinical Assessments	158
Research Subject	Clinical Assessments	163
Summary of Seizure Diary counts	Clinical Assessments	154
Vineland-II - Survey Form (2005)	Clinical Assessments	154

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
37119787	Create Study	Epilepsy Severity Is Associated With Head Circumference and Growth Rate in Infants With Tuberous Sclerosis Complex.	Pediatric neurology	Levine, Alexis; Davis, Peter; Zhang, Bo; Peters, Jurriaan; Filip-Dhima, Rajna; Warfield, Simon K; Prohl, Anna; Capal, Jamie; Krueger, Darcy; Bebin, E Martina; Northrup, Hope; Wu, Joyce Y; Sahin, Mustafa; TACERN Study Group	July 1, 2023	Not Determined
36394118	Create Study	Tubers Affecting the Fusiform Face Area Are Associated with Autism Diagnosis.	Annals of neurology	Cohen, Alexander L; Kroeck, Mallory R; Wall, Juliana; McManus, Peter; Ovchinnikova, Arina; Sahin, Mustafa; Krueger, Darcy A; Bebin, E Martina; Northrup, Hope; Wu, Joyce Y; Warfield, Simon K; Peters, Jurriaan M; Fox, Michael D; Tuberous Sclerosis Complex Autism Center of Excellence Network Study Group	March 1, 2023	Not Determined
35729081	Create Study	Limited utility of structural MRI to identify the epileptogenic zone in young children with tuberous sclerosis.	Journal of neuroimaging : official journal of the American Society of Neuroimaging	Nijman, Maaike; Yang, Edward; Jaimes, Camilo; Prohl, Anna K; Sahin, Mustafa; Krueger, Darcy A; Wu, Joyce Y; Northrup, Hope; Stone, Scellig S D; Madsen, Joseph R; Fallah, Aria; Blount, Jeffrey P; Weiner, Howard L; Grayson, Leslie; Bebin, E Martina; Porter, Brenda E; Warfield, Simon K; Prabhu, Sanjay P; Peters, Jurriaan M; TACERN Study Group	September 1, 2022	Not Determined
34668231	Create Study	Profile of Autism Spectrum Disorder in Tuberous Sclerosis Complex: Results from a Longitudinal, Prospective, Multisite Study.	Annals of neurology	Capal, Jamie K; Williams, Marian E; Pearson, Deborah A; Kissinger, Robin; Horn, Paul S; Murray, Donna; Currans, Kristn; Kent, Bridget; Bebin, Martina; Northrup, Hope; Wu, Joyce Y; Sahin, Mustafa; Krueger, Darcy A; TACERN Study Group	December 1, 2021	Not Determined
34343869	Create Study	Epilepsy Is Heterogeneous in Early-Life Tuberous Sclerosis Complex.	Pediatric neurology	Ihnen, S Katie Z; Capal, Jamie K; Horn, Paul S; Griffith, Molly; Sahin, Mustafa; Bebin, E Martina; Wu, Joyce Y; Northrup, Hope; Krueger, Darcy A; TACERN study group	October 1, 2021	Not Determined
33410532	Create Study	Tuber Locations Associated with Infantile Spasms Map to a Common Brain Network.	Annals of neurology	Cohen, Alexander L; Mulder, Brechtje P F; Prohl, Anna K; Soussand, Louis; Davis, Peter; Kroeck, Mallory R; McManus, Peter; Gholipour, Ali; Scherrer, Benoit; Bebin, E Martina; Wu, Joyce Y; Northrup, Hope; Krueger, Darcy A; Sahin, Mustafa; Warfield, Simon K; Fox, Michael D; Peters, Jurriaan M; Tuberous Sclerosis Complex Autism Center of Excellence Network Study Group	April 1, 2021	Not Determined
33011641	Create Study	Epilepsy Risk Prediction Model for Patients With Tuberous Sclerosis Complex.	Pediatric neurology	Farach, Laura S; Richard, Melissa A; Lupo, Philip J; Sahin, Mustafa; Krueger, Darcy A; Wu, Joyce Y; Bebin, Elizabeth M; Au, Kit Sing; Northrup, Hope; TACERN Study Group	December 1, 2020	Not Determined
32927206	Create Study	Scalp EEG interictal high frequency oscillations as an objective biomarker of infantile spasms.	Clinical neurophysiology : official journal of the International Federation of Clinical Neurophysiology	Nariai, Hiroki; Hussain, Shaun A; Bernardo, Danilo; Motoi, Hirotaka; Sonoda, Masaki; Kuroda, Naoto; Asano, Eishi; Nguyen, Jimmy C; Elashoff, David; Sankar, Raman; Bragin, Anatol; Staba, Richard J; Wu, Joyce Y	November 1, 2020	Not Determined
32418847	Create Study	Pilot Study of Neurodevelopmental Impact of Early Epilepsy Surgery in Tuberous Sclerosis Complex.	Pediatric neurology	Grayson, Leslie E; Peters, Jurriaan M; McPherson, Tarrant; Krueger, Darcy A; Sahin, Mustafa; Wu, Joyce Y; Northrup, Hope A; Porter, Brenda; Cutter, Gary R; O'Kelley, Sarah E; Krefting, Jessica; Stone, Scellig S; Madsen, Joseph R; Fallah, Aria; Blount, Jeffrey P; Weiner, Howard L; Bebin, E Martina; TACERN Study Group	August 2020	Not Determined
32348367	Create Study	Deep learning in rare disease. Detection of tubers in tuberous sclerosis complex.	PloS one	Sánchez Fernández, Iván; Yang, Edward; Calvachi, Paola; Amengual-Gual, Marta; Wu, Joyce Y; Krueger, Darcy; Northrup, Hope; Bebin, Martina E; Sahin, Mustafa; Yu, Kun-Hsing; Peters, Jurriaan M; TACERN Study Group	January 2020	Not Determined
32133630	Create Study	Scalp electroencephalographic spikes predict impending epilepsy in tuberous sclerosis complex infants: A longitudinal observational study.	Epilepsia	Molinero, Isaac; Ferastraoaru, Victor; Boro, Alexis; Moshé, Solomon L	April 1, 2020	Not Determined
31864941	Create Study	Language predictors of autism spectrum disorder in young children with tuberous sclerosis complex.	Epilepsy & behavior : E&B	Schoenberger, Alexandra; Capal, Jamie K; Ondracek, Annie; Horn, Paul S; Murray, Donna; Byars, Anna Weber; Pearson, Deborah A; Williams, Marian E; Bebin, Martina; Northrup, Hope; Wu, Joyce Y; Sahin, Mustafa; Krueger, Darcy A	February 2020	Not Determined
31838998	Create Study	Early white matter development is abnormal in tuberous sclerosis complex patients who develop autism spectrum disorder.	Journal of neurodevelopmental disorders	Prohl, Anna K; Scherrer, Benoit; Tomas-Fernandez, Xavier; Davis, Peter E; Filip-Dhima, Rajna; Prabhu, Sanjay P; Peters, Jurriaan M; Bebin, E Martina; Krueger, Darcy A; Northrup, Hope; Wu, Joyce Y; Sahin, Mustafa; Warfield, Simon K; TACERN Study Group	December 2019	Not Determined
31812987	Create Study	The Connectivity Fingerprint of the Fusiform Gyrus Captures the Risk of Developing Autism in Infants with Tuberous Sclerosis Complex.	Cerebral cortex (New York, N.Y. : 1991)	Scherrer, Benoit; Prohl, Anna K; Taquet, Maxime; Kapur, Kush; Peters, Jurriaan M; Tomas-Fernandez, Xavier; Davis, Peter E; M Bebin, Elizabeth; Krueger, Darcy A; Northrup, Hope; Y Wu, Joyce; Sahin, Mustafa; Warfield, Simon K	April 14, 2020	Not Determined
31811616	Create Study	EEG Spectral Features in Sleep of Autism Spectrum Disorders in Children with Tuberous Sclerosis Complex.	Journal of autism and developmental disorders	Cook, Ian A; Wilson, Andrew C; Peters, Jurriaan M; Goyal, Monisha N; Bebin, E Martina; Northrup, Hope; Krueger, Darcy; Leuchter, Andrew F; Sahin, Mustafa; TACERN Study Group	March 1, 2020	Not Determined
31691264	Create Study	Scalp EEG spikes predict impending epilepsy in TSC infants: A longitudinal observational study.	Epilepsia	Wu, Joyce Y; Goyal, Monisha; Peters, Jurriaan M; Krueger, Darcy; Sahin, Mustafa; Northrup, Hope; Au, Kit S; O'Kelley, Sarah; Williams, Marian; Pearson, Deborah A; Hanson, Ellen; Byars, Anna W; Krefting, Jessica; Beasley, Mark; Cutter, Gary; Limdi, Nita; Bebin, E Martina	December 2019	Not Determined
31569042	Create Study	Prospective observational study: Fast ripple localization delineates the epileptogenic zone.	Clinical neurophysiology : official journal of the International Federation of Clinical Neurophysiology	Nariai H, Hussain SA, Bernardo D, Fallah A, Murata KK, Nguyen JC, Rajaraman RR, Rao LM, Matsumoto JH, Lerner JT, Salamon N, Elashoff D, Sankar R, Wu JY	November 2019	Not Determined
31554896	Create Study	Extra-axonal restricted diffusion as an in-vivo marker of reactive microglia.	Scientific reports	Taquet, Maxime; Jankovski, Aleksandar; Rensonnet, Gaëtan; Jacobs, Damien; des Rieux, Anne; Macq, Benoît; Warfield, Simon K; Scherrer, Benoît	September 2019	Not Determined
31417372	Create Study	Reproducibility of Structural and Diffusion Tensor Imaging in the TACERN Multi-Center Study.	Frontiers in integrative neuroscience	Prohl, Anna K; Scherrer, Benoit; Tomas-Fernandez, Xavier; Filip-Dhima, Rajna; Kapur, Kush; Velasco-Annis, Clemente; Clancy, Sean; Carmody, Erin; Dean, Meghan; Valle, Molly; Prabhu, Sanjay P; Peters, Jurriaan M; Bebin, E Martina; Krueger, Darcy A; Northrup, Hope; Wu, Joyce Y; Sahin, Mustafa; Warfield, Simon K	January 2019	Not Determined
31353853	Create Study	White matter mean diffusivity correlates with myelination in tuberous sclerosis complex.	Annals of clinical and translational neurology	Peters JM, Struyven RR, Prohl AK, Vasung L, Stajduhar A, Taquet M, Bushman JJ, Lidov H, Singh JM, Scherrer B, Madsen JR, Prabhu SP, Sahin M, Afacan O, Warfield SK	July 2019	Not Determined
31304656	Create Study	Resting-State fMRI Networks in Children with Tuberous Sclerosis Complex.	Journal of neuroimaging : official journal of the American Society of Neuroimaging	Ahtam, Banu; Dehaes, Mathieu; Sliva, Danielle D; Peters, Jurriaan M; Krueger, Darcy A; Bebin, Elizabeth Martina; Northrup, Hope; Wu, Joyce Y; Warfield, Simon K; Sahin, Mustafa; Grant, Patricia Ellen; TACERN Study Group	November 2019	Not Determined
31297797	Create Study	Increased electroencephalography connectivity precedes epileptic spasm onset in infants with tuberous sclerosis complex.	Epilepsia	Davis, Peter E; Kapur, Kush; Filip-Dhima, Rajna; Trowbridge, Sara K; Little, Elaina; Wilson, Andrew; Leuchter, Andrew; Bebin, Elizabeth M; Krueger, Darcy; Northrup, Hope; Wu, Joyce Y; Sahin, Mustafa; Peters, Jurriaan M; Tuberous Sclerosis Autism Centers of Excellence Research Network	August 2019	Not Determined
31261349	Create Study	Lesion-Constrained Electrical Source Imaging: A Novel Approach in Epilepsy Surgery for Tuberous Sclerosis Complex.	Journal of clinical neurophysiology : official publication of the American Electroencephalographic Society	Peters, Jurriaan M; Hyde, Damon E; Chu, Catherine J; Boom, Merel; Scherrer, Benoit; Madsen, Joseph R; Stone, Scellig S; Ouaalam, Hakim; Prabhu, Sanjay P; Sahin, Mustafa; Warfield, Simon K	January 2020	Not Determined
31018109	Create Study	Genetic Etiologies, Diagnosis, and Treatment of Tuberous Sclerosis Complex.	Annual review of genomics and human genetics	Salussolia, Catherine L; Klonowska, Katarzyna; Kwiatkowski, David J; Sahin, Mustafa	August 2019	Not Determined
31005478	Create Study	Tuberous Sclerosis Complex Genotypes and Developmental Phenotype.	Pediatric neurology	Farach LS, Pearson DA, Woodhouse JP, Schraw JM, Sahin M, Krueger DA, Wu JY, Bebin EM, Lupo PJ, Au KS, Northrup H,	July 2019	Not Determined
30945897	Create Study	Impacting development in infants with tuberous sclerosis complex: Multidisciplinary research collaboration.	The American psychologist	Williams ME, Pearson DA, Capal JK, Byars AW, Murray DS, Kissinger R, O'Kelley SE, Hanson E, Bing NM, Kent B, Wu JY, Northrup H, Bebin EM, Sahin M, Krueger D,	April 2019	Not Determined
30564771	Create Study	Interrater reliability in visual identification of interictal high-frequency oscillations on electrocorticography and scalp EEG.	Epilepsia open	Nariai, Hiroki; Wu, Joyce Y; Bernardo, Danilo; Fallah, Aria; Sankar, Raman; Hussain, Shaun A	December 2018	Not Determined
30443929	Create Study	Motion-robust diffusion compartment imaging using simultaneous multi-slice acquisition.	Magnetic resonance in medicine	Marami B, Scherrer B, Khan S, Afacan O, Prabhu SP, Sahin M, Warfield SK, Gholipour A	May 2019	Not Determined
30441054	Create Study	Automated Detection of High Frequency Oscillations in Human Scalp Electroencephalogram.	Conference proceedings : ... Annual International Conference of the IEEE Engineering in Medicine and Biology Society. IEEE Engineering in Medicine and Biology Society. Annual Conference	Charupanit K, Nunez MD, Bernardo D, Bebin M, Krueger DA, Northrup H, Sahin M, Wu JY, Lopour BA	July 2018	Not Determined
30424962	Create Study	Longitudinal Effects of Everolimus on White Matter Diffusion in Tuberous Sclerosis Complex.	Pediatric neurology	Peters, Jurriaan M; Prohl, Anna; Kapur, Kush; Nath, Audrey; Scherrer, Benoit; Clancy, Sean; Prabhu, Sanjay P; Sahin, Mustafa; Franz, David Neal; Warfield, Simon K; Krueger, Darcy A	January 2019	Not Determined
30296632	Create Study	High vigabatrin dosage is associated with lower risk of infantile spasms relapse among children with tuberous sclerosis complex.	Epilepsy research	Hussain SA, Schmid E, Peters JM, Goyal M, Bebin EM, Northrup H, Sahin M, Krueger DA, Wu JY,	December 2018	Not Determined
30282007	Create Study	Towards microstructure fingerprinting: Estimation of tissue properties from a dictionary of Monte Carlo diffusion MRI simulations.	NeuroImage	Rensonnet, Gaëtan; Scherrer, Benoît; Girard, Gabriel; Jankovski, Aleksandar; Warfield, Simon K; Macq, Benoît; Thiran, Jean-Philippe; Taquet, Maxime	January 2019	Not Determined
30255984	Create Study	Genetics, genomics, and genotype-phenotype correlations of TSC: Insights for clinical practice.	American journal of medical genetics. Part C, Seminars in medical genetics	Peron, Angela; Au, Kit Sing; Northrup, Hope	September 2018	Not Determined
30149055	Create Study	A unified circuit for social behavior.	Neurobiology of learning and memory	Modi, Meera E; Sahin, Mustafa	November 2019	Not Determined
30120133	Create Study	Removing high-frequency oscillations: A prospective multicenter study on seizure outcome.	Neurology	Jacobs, Julia; Wu, Joyce Y; Perucca, Piero; Zelmann, Rina; Mader, Malenka; Dubeau, Francois; Mathern, Gary W; Schulze-Bonhage, Andreas; Gotman, Jean	September 11, 2018	Not Determined
30117265	Create Study	A clinical update on tuberous sclerosis complex-associated neuropsychiatric disorders (TAND).	American journal of medical genetics. Part C, Seminars in medical genetics	de Vries, Petrus J; Wilde, Lucy; de Vries, Magdalena C; Moavero, Romina; Pearson, Deborah A; Curatolo, Paolo	September 2018	Not Determined
30101418	Create Study	The Way Forward for Mechanism-Based Therapeutics in Genetically Defined Neurodevelopmental Disorders.	Clinical pharmacology and therapeutics	Modi, Meera E; Sahin, Mustafa	October 2018	Not Determined
30041061	Create Study	Exploring early human brain development with structural and physiological neuroimaging.	NeuroImage	Vasung, Lana; Abaci Turk, Esra; Ferradal, Silvina L; Sutin, Jason; Stout, Jeffrey N; Ahtam, Banu; Lin, Pei-Yi; Grant, P Ellen	February 2019	Not Determined
29939236	Create Study	Corpus Callosum White Matter Diffusivity Reflects Cumulative Neurological Comorbidity in Tuberous Sclerosis Complex.	Cerebral cortex (New York, N.Y. : 1991)	Baumer FM, Peters JM, Clancy S, Prohl AK, Prabhu SP, Scherrer B, Jansen FE, Braun KPJ, Sahin M, Stamm A, Warfield SK	October 2018	Not Determined
29687739	Create Study	Vigabatrin for Epileptic Spasms and Tonic Seizures in Tuberous Sclerosis Complex.	Journal of child neurology	Van Der Poest Clement EA, Sahin M, Peters JM	July 2018	Not Determined
29673547	Create Study	Visual and semi-automatic non-invasive detection of interictal fast ripples: A potential biomarker of epilepsy in children with tuberous sclerosis complex.	Clinical neurophysiology : official journal of the International Federation of Clinical Neurophysiology	Bernardo D, Nariai H, Hussain SA, Sankar R, Salamon N, Krueger DA, Sahin M, Northrup H, Bebin EM, Wu JY,	July 2018	Not Determined
29572283	Create Study	Cerebellar volume as an imaging marker of development in infants with tuberous sclerosis complex.	Neurology	Srivastava, Siddharth; Prohl, Anna K; Scherrer, Benoit; Kapur, Kush; Krueger, Darcy A; Warfield, Simon K; Sahin, Mustafa; TACERN Study Group	April 24, 2018	Not Determined
29490194	Create Study	Abnormal mTOR Activation in Autism.	Annual review of neuroscience	Winden, Kellen D; Ebrahimi-Fakhari, Darius; Sahin, Mustafa	July 2018	Not Determined
29101226	Create Study	Presentation and Diagnosis of Tuberous Sclerosis Complex in Infants.	Pediatrics	Davis, Peter E; Filip-Dhima, Rajna; Sideridis, Georgios; Peters, Jurriaan M; Au, Kit Sing; Northrup, Hope; Bebin, E Martina; Wu, Joyce Y; Krueger, Darcy; Sahin, Mustafa; Tuberous Sclerosis Complex Autism Center of Excellence Research Network	December 2017	Not Relevant
28844798	Create Study	Utility of the Autism Observation Scale for Infants in Early Identification of Autism in Tuberous Sclerosis Complex.	Pediatric neurology	Capal, Jamie K; Horn, Paul S; Murray, Donna S; Byars, Anna Weber; Bing, Nicole M; Kent, Bridget; Bucher, Lindsey A; Williams, Marian E; O'Kelley, Sarah; Pearson, Deborah A; Sahin, Mustafa; Krueger, Darcy A; TACERN Study Group	October 2017	Relevant
28801253	Create Study	Investigating the maturation of microstructure and radial orientation in the preterm human cortex with diffusion MRI.	NeuroImage	Eaton-Rosen, Zach; Scherrer, Benoit; Melbourne, Andrew; Ourselin, Sebastien; Neil, Jeffrey J; Warfield, Simon K	November 2017	Not Determined
28714064	Create Study	Assessing the validity of the approximation of diffusion-weighted-MRI signals from crossing fascicles by sums of signals from single fascicles.	Magnetic resonance in medicine	Rensonnet G, Scherrer B, Warfield SK, Macq B, Taquet M	April 2018	Not Determined
28649286	Create Study	Autism spectrum disorder and epileptic encephalopathy: common causes, many questions.	Journal of neurodevelopmental disorders	Srivastava S, Sahin M	January 2017	Not Relevant
28644979	Create Study	Intraoperative fast ripples independently predict postsurgical epilepsy outcome: Comparison with other electrocorticographic phenomena.	Epilepsy research	Hussain SA, Mathern GW, Hung P, Weng J, Sankar R, Wu JY	September 2017	Not Relevant
28643795	Create Study	The genomic landscape of tuberous sclerosis complex.	Nature communications	Martin KR, Zhou W, Bowman MJ, Shih J, Au KS, Dittenhafer-Reed KE, Sisson KA, Koeman J, Weisenberger DJ, Cottingham SL, Deroos ST, Devinsky O, Winn ME, Cherniack AD, Shen H, Northrup H, Krueger DA, Mackeigan JP	June 2017	Not Relevant
28457992	Create Study	Influence of seizures on early development in tuberous sclerosis complex.	Epilepsy & behavior : E&B	Capal, Jamie K; Bernardino-Cuesta, Beatriz; Horn, Paul S; Murray, Donna; Byars, Anna Weber; Bing, Nicole M; Kent, Bridget; Pearson, Deborah A; Sahin, Mustafa; Krueger, Darcy A; TACERN Study Group	May 2017	Not Relevant
28127590	Create Study	Motion-Robust Reconstruction based on Simultaneous Multi-Slice Registration for Diffusion-Weighted MRI of Moving Subjects.	Medical image computing and computer-assisted intervention : MICCAI ... International Conference on Medical Image Computing and Computer-Assisted Intervention	Marami B, Scherrer B, Afacan O, Warfield SK, Gholipour A	October 2016	Not Determined
27956565	Create Study	Randomized placebo-controlled study of lovastatin in children with neurofibromatosis type 1.	Neurology	Payne, Jonathan M; Barton, Belinda; Ullrich, Nicole J; Cantor, Alan; Hearps, Stephen J C; Cutter, Gary; Rosser, Tena; Walsh, Karin S; Gioia, Gerard A; Wolters, Pamela L; Tonsgard, James; Schorry, Elizabeth; Viskochil, David; Klesse, Laura; Fisher, Michael; Gutmann, David H; Silva, Alcino J; Hunter, Scott J; Rey-Casserly, Celiane; Cantor, Nancy L; Byars, Anna W; Stavinoha, Peter L; Ackerson, Joseph D; Armstrong, Carol L; Isenberg, Jill; O'Neil, Sharon H; Packer, Roger J; Korf, Bruce; Acosta, Maria T; North, Kathryn N; NF Clinical Trials Consortium	December 13, 2016	Not Determined
27834639	Create Study	Motion-Robust Diffusion-Weighted Brain MRI Reconstruction Through Slice-Level Registration-Based Motion Tracking.	IEEE transactions on medical imaging	Marami B, Scherrer B, Afacan O, Erem B, Warfield SK, Gholipour A	October 2016	Not Determined
27815402	Create Study	Long-term treatment of epilepsy with everolimus in tuberous sclerosis.	Neurology	Krueger, Darcy A; Wilfong, Angus A; Mays, Maxwell; Talley, Christina M; Agricola, Karen; Tudor, Cindy; Capal, Jamie; Holland-Bouley, Katherine; Franz, David Neal	December 6, 2016	Not Determined
27647682	Create Study	Active delineation of Meyer''s loop using oriented priors through MAGNEtic tractography (MAGNET).	Human brain mapping	Chamberland, Maxime; Scherrer, Benoit; Prabhu, Sanjay P; Madsen, Joseph; Fortin, David; Whittingstall, Kevin; Descoteaux, Maxime; Warfield, Simon K	January 2017	Relevant
27267556	Create Study	Advances and Future Directions for Tuberous Sclerosis Complex Research: Recommendations From the 2015 Strategic Planning Conference.	Pediatric neurology	Sahin M, Henske EP, Manning BD, Ess KC, Bissler JJ, Klann E, Kwiatkowski DJ, Roberds SL, Silva AJ, Hillaire-Clarke CS, Young LR, Zervas M, Mamounas LA,	July 2016	Not Relevant
27199644	Create Study	Editorial: Essential Pathways and Circuits of Autism Pathogenesis.	Frontiers in neuroscience	Dölen, Gül; Sahin, Mustafa	January 2016	Not Relevant
26715604	Create Study	Congenital disorders of autophagy: an emerging novel class of inborn errors of neuro-metabolism.	Brain : a journal of neurology	Ebrahimi-Fakhari D, Saffari A, Wahlster L, Lu J, Byrne S, Hoffmann GF, Jungbluth H, Sahin M	February 2016	Not Relevant
26632048	Create Study	Super-resolution reconstruction in frequency, image, and wavelet domains to reduce through-plane partial voluming in MRI.	Medical physics	Gholipour A, Afacan O, Aganj I, Scherrer B, Prabhu SP, Sahin M, Warfield SK	December 2015	Not Determined
26529580	Create Study	Improved fidelity of brain microstructure mapping from single-shell diffusion MRI.	Medical image analysis	Taquet M, Scherrer B, Boumal N, Peters JM, Macq B, Warfield SK	December 2015	Not Determined
26498039	Create Study	Clinical Electroencephalographic Biomarker for Impending Epilepsy in Asymptomatic Tuberous Sclerosis Complex Infants.	Pediatric neurology	Wu JY, Peters JM, Goyal M, Krueger D, Sahin M, Northrup H, Au KS, Cutter G, Bebin EM	January 2016	Not Determined
26472761	Create Study	Genes, circuits, and precision therapies for autism and related neurodevelopmental disorders.	Science (New York, N.Y.)	Sahin, Mustafa; Sur, Mriganka	November 2015	Not Determined
26432846	Create Study	Tubers are neither static nor discrete: Evidence from serial diffusion tensor imaging.	Neurology	Peters JM, Prohl AK, Tomas-Fernandez XK, Taquet M, Scherrer B, Prabhu SP, Lidov HG, Singh JM, Jansen FE, Braun KP, Sahin M, Warfield SK, Stamm A	November 3, 2015	Not Determined
26362832	Create Study	Characterizing brain tissue by assessment of the distribution of anisotropic microstructural environments in diffusion-compartment imaging (DIAMOND).	Magnetic resonance in medicine	Scherrer B, Schwartzman A, Taquet M, Sahin M, Prabhu SP, Warfield SK	September 2016	Not Determined
26303409	Create Study	Cerebellar Development and Autism Spectrum Disorder in Tuberous Sclerosis Complex.	Journal of child neurology	Sundberg M, Sahin M	December 2015	Not Relevant
26167096	Create Study	Accelerated High Spatial Resolution Diffusion-Weighted Imaging.	Information processing in medical imaging : proceedings of the ... conference	Scherrer B, Afacan O, Taquet M, Prabhu SP, Gholipour A, Warfield SK	2015	Not Determined
26022167	Create Study	Tuberous sclerosis complex.	Pediatric clinics of North America	DiMario FJ, Sahin M, Ebrahimi-Fakhari D	June 2015	Not Relevant
25986747	Create Study	Tuberous Sclerosis: A New Frontier in Targeted Treatment of Autism.	Neurotherapeutics : the journal of the American Society for Experimental NeuroTherapeutics	Davis, Peter E; Peters, Jurriaan M; Krueger, Darcy A; Sahin, Mustafa	July 2015	Not Determined
25862116	Create Study	Melatonin improves sleep in children with epilepsy: a randomized, double-blind, crossover study.	Sleep medicine	Jain SV, Horn PS, Simakajornboon N, Beebe DW, Holland K, Byars AW, Glauser TA	May 2015	Not Determined
25817702	Create Study	Longitudinal changes in diffusion properties in white matter pathways of children with tuberous sclerosis complex.	Pediatric neurology	Baumer FM, Song JW, Mitchell PD, Pienaar R, Sahin M, Grant PE, Takahashi E	June 2015	Not Determined
25750257	Create Study	Altered Structural Brain Networks in Tuberous Sclerosis Complex.	Cerebral cortex (New York, N.Y. : 1991)	Im K, Ahtam B, Haehn D, Peters JM, Warfield SK, Sahin M, Ellen Grant P	May 2016	Not Determined
25695134	Create Study	Autism and the synapse: emerging mechanisms and mechanism-based therapies.	Current opinion in neurology	Ebrahimi-Fakhari D, Sahin M	April 2015	Not Relevant
25532776	Create Study	Tuberous sclerosis associated neuropsychiatric disorders (TAND) and the TAND Checklist.	Pediatric neurology	de Vries PJ, Whittemore VH, Leclezio L, Byars AW, Dunn D, Ess KC, Hook D, King BH, Sahin M, Jansen A	January 2015	Not Determined
25385396	Create Study	Hypsarrhythmia assessment exhibits poor interrater reliability: a threat to clinical trial validity.	Epilepsia	Hussain SA, Kwong G, Millichap JJ, Mytinger JR, Ryan N, Matsumoto JH, Wu JY, Lerner JT, Sankar R	January 2015	Not Determined
25374355	Create Study	The neurology of mTOR.	Neuron	Lipton JO, Sahin M	October 2014	Not Determined
24830765	Create Study	Clobazam: effect on frequency of seizures and safety profile in different subgroups of children with epilepsy.	Pediatric neurology	Klehm J, Thome-Souza S, Sánchez Fernández I, Bergin AM, Bolton J, Harini C, Kadish NE, Libenson M, Peters J, Poduri A, Rotenberg A, Takeoka M, Bourgeois B, Loddenkemper T	July 2014	Not Determined
24684014	Create Study	Reliable selection of the number of fascicles in diffusion images by estimation of the generalization error.	Information processing in medical imaging : proceedings of the ... conference	Scherrer B, Taquet M, Warfield SK	2013	Not Determined
24505801	Create Study	Characterizing the distribution of anisotropic micro-structural environments with diffusion-weighted imaging (DIAMOND).	Medical image computing and computer-assisted intervention : MICCAI ... International Conference on Medical Image Computing and Computer-Assisted Intervention	Scherrer B, Schwartzman A, Taquet M, Prabhu SP, Sahin M, Akhondi-Asl A, Warfield SK	2013	Not Determined
24505728	Create Study	Estimation of a multi-fascicle model from single B-value data with a population-informed prior.	Medical image computing and computer-assisted intervention : MICCAI ... International Conference on Medical Image Computing and Computer-Assisted Intervention	Taquet M, Scherrer B, Boumal N, Macq B, Warfield SK	2013	Not Determined
24489482	Create Study	Diffusion tensor imaging and related techniques in tuberous sclerosis complex: review and future directions.	Future neurology	Peters JM, Taquet M, Prohl AK, Scherrer B, van Eeghen AM, Prabhu SP, Sahin M, Warfield SK	September 2013	Not Determined
24486221	Create Study	Mechanism-based treatment in tuberous sclerosis complex.	Pediatric neurology	Jülich K, Sahin M	April 2014	Not Determined
24446954	Create Study	Treatment of infantile spasms with very high dose prednisolone before high dose adrenocorticotropic hormone.	Epilepsia	Hussain, Shaun A; Shinnar, Shlomo; Kwong, Grace; Lerner, Jason T; Matsumoto, Joyce H; Wu, Joyce Y; Shields, W Donald; Sankar, Raman	January 1, 2014	Not Determined
24372698	Create Study	Insult to injury: transient encephalopathy in a brain-injured adolescent.	Journal of paediatrics and child health	Peters JM, Fernández IS	May 2014	Not Determined
24235301	Create Study	A mathematical framework for the registration and analysis of multi-fascicle models for population studies of the brain microstructure.	IEEE transactions on medical imaging	Taquet M, Scherrer B, Commowick O, Peters JM, Sahin M, Macq B, Warfield SK	February 2014	Not Determined
23991336	Create Study	Continuous Spikes and Waves during Sleep: Electroclinical Presentation and Suggestions for Management.	Epilepsy research and treatment	Sánchez Fernández, Iván; Chapman, Kevin E; Peters, Jurriaan M; Harini, Chellamani; Rotenberg, Alexander; Loddenkemper, Tobias	January 1, 2013	Not Determined
23953953	Create Study	Long-term response to high-dose diazepam treatment in continuous spikes and waves during sleep.	Pediatric neurology	Sánchez Fernández I, Peters JM, An S, Bergin AM, Takeoka M, Rotenberg A, Kothare SV, Riviello JJ, Loddenkemper T	September 2013	Not Determined
23859506	Create Study	[The brain functional network of children with autism: redundancy and disconnection].	Medecine sciences : M/S	Taquet, Maxime; Peters, Jurriaan M	June 2013	Not Determined
23852707	Create Study	Management of CNS-related Disease Manifestations in Patients With Tuberous Sclerosis Complex.	Current treatment options in neurology	Krueger DA	October 2013	Not Determined
23744673	Create Study	Simultaneous truth and performance level estimation through fusion of probabilistic segmentations.	IEEE transactions on medical imaging	Akhondi-Asl, Alireza; Warfield, Simon K	October 2013	Not Determined
23445896	Create Study	Brain functional networks in syndromic and non-syndromic autism: a graph theoretical study of EEG connectivity.	BMC medicine	Peters JM, Taquet M, Vega C, Jeste SS, Fernández IS, Tan J, Nelson CA, Sahin M, Warfield SK	2013	Not Determined
23291250	Create Study	Automated quantification of spikes.	Epilepsy & behavior : E&B	Chavakula V, Sánchez Fernández I, Peters JM, Popli G, Bosl W, Rakhade S, Rotenberg A, Loddenkemper T	February 2013	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	150	01/15/2015	163	05/15/2015	163	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
Mullen Scales of Early Learning	150	07/15/2013	158	11/15/2013	158	Approved
Medical History	150	01/15/2014	160	05/15/2014	160	Approved
Demographics	150	07/15/2013	161	11/15/2013	161	Approved
Child Behavior Checklist (CBCL)	150	07/15/2014	146	11/15/2014	146	Approved
Early Social Communication Scales (ESCS)	150	07/15/2014	151	11/15/2014	151	Approved
Preschool Language Scale (PLS)	150	07/15/2013	158	11/15/2013	158	Approved
Physical Exam	150	07/15/2013	160	11/15/2013	160	Approved
Classification of Seizures	150	07/15/2013	160	11/15/2013	160	Approved
Summary of Seizure Diary counts	150	01/15/2014	154	05/15/2014	154	Approved
Vineland (Parent and Caregiver)	150	07/15/2013	154	11/15/2013	154	Approved
Imaging (Structural, fMRI, DTI, PET, microscopy)	150	07/15/2013	135	11/15/2013	135	Approved
EEG	150	07/15/2014	162	12/31/2018	162	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
Examining the validity of the use of ratio IQs in psychological assessments	IQ tests are amongst the most used psychological assessments, both in research and clinical settings. For participants who cannot complete IQ tests normed for their age, ratio IQ scores (RIQ) are routinely computed and used as a proxy of IQ, especially in large research databases to avoid missing data points. However, because it has never been scientifically validated, this practice is questionable. In the era of big data, it is important to examine the validity of this widely used practice. In this paper, we use the case of autism to examine the differences between standard full-scale IQ (FSIQ) and RIQ. Data was extracted from four databases in which ages, FSIQ scores and subtests raw scores were available for autistic participants between 2 and 17 years old. The IQ tests included were the MSEL (N=12033), DAS-II early years (N=1270), DAS-II school age (N=2848), WISC-IV (N=471) and WISC-V (N=129). RIQs were computed for each participant as well as the discrepancy (DSC) between RIQ and FSIQ. We performed two linear regressions to respectively assess the effect of FSIQ and of age on the DSC for each IQ test, followed by additional analyses comparing age subgroups as well as FSIQ subgroups on DSC. Participants at the extremes of the FSIQ distribution tended to have a greater DSC than participants with average FSIQ. Furthermore, age significantly predicted the DSC, with RIQ superior to FSIQ for younger participants while the opposite was found for older participants. These results question the validity of this widely used alternative scoring method, especially for individuals at the extremes of the normal distribution, with whom RIQs are most often employed.	158/17423	Secondary Analysis	Shared
The importance of low IQ to early diagnosis of autism	Some individuals can flexibly adapt to life’s changing demands while others, in particular those with Autism Spectrum Disorder (ASD), find it challenging. The origin of early individual differences in cognitive abilities, the putative tools with which to navigate novel information in life, including in infants later diagnosed with ASD remains unexplored. Moreover, the role of intelligence quotient (IQ) vis-à-vis core features of autism remains debated. We systematically investigate the contribution of early IQ in future autism outcomes in an extremely large, population-based study of 8,000 newborns, infants, and toddlers from the US between 2 and 68 months with over 15,000 cross-sectional and longitudinal assessments, and for whom autism outcomes are ascertained or ruled out by about 2-4 years. This population is representative of subjects involved in the National Institutes of Health (NIH)-funded research, mainly on atypical development, in the US. Analyses using predetermined age bins showed that IQ scores are consistently lower in ASD relative to TD at all ages (p<0.001), and IQ significantly correlates with calibrated severity scores (total CSS, as well as non-verbal and verbal CSS) on the ADOS. Note, VIQ is no better than the full-scale IQ to predict ASD cases. These findings raise new, compelling questions about potential atypical brain circuitry affecting performance in both verbal and nonverbal abilities and that precede an ASD diagnosis. This study is the first to establish prospectively that low early IQ is a major feature of ASD in early childhood.	158/6323	Secondary Analysis	Shared
Derivation of Brain Structure Volumes from MRI Neuroimages hosted by NDAR using C-PAC pipeline and ANTs	An automated pipeline was developed to reference Neuroimages hosted by the National Database for Autism Research (NDAR) and derive volumes for distinct brain structures using Advanced Normalization Tools (ANTs) and the Configurable-Pipeline for the Analysis of Connectomes (C-PAC) platform. This pipeline utilized the ANTs cortical thickness methodology discuessed in "Large-Scale Evaluation of ANTs and Freesurfer Cortical Tchickness Measurements" [http://www.ncbi.nlm.nih.gov/pubmed/24879923] to extract a cortical thickness volume from T1-weighted anatomical MRI data gathered from the NDAR database. This volume was then registered to an stereotaxic-space anatomical template (OASIS-30 Atropos Template) which was acquired from the Mindboggle Project webpage [http://mindboggle.info/data.html]. After registration, the mean cortical thickness was calculated at 31 ROIs on each hemisphere of the cortex and using the Desikan-Killiany-Tourville (DKT-31) cortical labelling protocol [http://mindboggle.info/faq/labels.html] over the OASIS-30 template. NOTE: This study is ongoing; additional data my be available in the future. As a result, each subject that was processed has a cortical thickness volume image and a text file with the mean thickness ROIs (in mm) stored in Amazon Web Services (AWS) Simple Storage Service (S3). Additionally, these results were tabulated in an AWS-hosted database (through NDAR) to enable simple, efficient querying and data access. All of the code used to perform this analysis is publicly available on Github [https://github.com/FCP-INDI/ndar-dev]. Additionally, as a computing platform, we developed an Amazon Machine Image (AMI) that comes fully equipped to run this pipeline on any dataset. Using AWS Elastic Cloud Computing (EC2), users can launch our publicly available AMI ("C-PAC with benchmark", AMI ID: "ami-fee34296", N. Virginia region) and run the ANTs cortical thickness pipeline. The AMI is fully compatible with Sun Grid Engine as well; this enables users to perform many pipeline runs in parallel over a cluster-computing framework.	6/1428	Secondary Analysis	Shared
Derivation of Quality Measures for Structural Images by Neuroimaging Pipelines	Using the National Database for Autism Research cloud platform, MRI data were analyzed using neuroimaging pipelines that included packages available as part of the Neuroimaging Informatics Tools and Resources Clearinghouse (NITRC) Computational Environment to derive standardized measures of MR image quality. Structural QA was performed according to Haselgrove, et al (http://journal.frontiersin.org/Journal/10.3389/fninf.2014.00052/abstract) to provide values for Signal to Noise (SNR) and Contrast to Noise (CNR) Ratios that can be compared between subjects within NDAR and between other public data releases.	6/423	Secondary Analysis	Shared
Derivation of Brain Structure Volumes from MRI Neuroimages hosted by NDAR using NITRC-CE	A draft publication is in progress. GitHub repository with code for working with NDAR Data is available here: https://github.com/chaselgrove/ndar Note this study is ongoing; additional may be added.	6/356	Secondary Analysis	Shared
A human craniofacial life-course: cross-sectional morphological covariations during postnatal growth, adolescence, and aging	Covariations between anatomical structures are fundamental to craniofacial ontogeny, maturation and aging and yet are rarely studied in such a cognate fashion. Here we offer a comprehensive investigation of the human craniofacial complex using freely available software and MRI datasets representing 575 individuals from 0 to 79 years old. We employ both standard craniometrics methods as well as Procrustes based analyses to capture and document cross-sectional trends. Findings suggest that anatomical structures behave primarily as modules, and manifest integrated patterns of shape change as they compete for space, particularly with relative expansions of the brain during early postnatal life and of the face during puberty. Sexual dimorphism was detected in infancy and intensified during adolescence with gender differences in the magnitude and pattern of morphological covariation as well as of aging. These findings partly support the spatial-packing hypothesis and reveal important insights into phenotypic adjustments to deep-rooted, and presumably genetically defined, trajectories of morphological size and shape change that characterise the normal human craniofacial life-course.	1/308	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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