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1 Numbers reported are subjects by age
New Trial
New Project

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

Please select an experiment type below

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

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

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

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

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Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
Early Biomarkers of Autism Spectrum Disorders in infants with Tuberous Sclerosis
Mustafa Sahin 
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.
NIMH Data Archive
Autism Centers of Excellence (ACE)
Funding Completed
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NIH - Extramural None

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


NDA Help Center

Collection - General Tab

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

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

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

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

Blinded Clinical Trial Status:

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

Funding Source

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

Supporting Documentation

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

Grant Information

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

Clinical Trials

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

Frequently Asked Questions

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


  • Administrator Privilege
    A privilege provided to a user associated with an NDA Collection or NDA Study whereby that user can perform a full range of actions including providing privileges to other users.
  • Collection Owner
    Generally, the Collection Owner is the contact PI listed on a grant. Only one NDA user is listed as the Collection owner. Most automated emails are primarily sent to the Collection Owner.
  • Collection Phase
    The Collection Phase provides information on data submission as opposed to grant/project completion so while the Collection phase and grant/project phase may be closely related they are often different. Collection users with Administrative Privileges are encouraged to edit the Collection Phase. The Program Officer as listed in eRA (for NIH funded grants) may also edit this field. Changes must be saved by clicking the Save button at the bottom of the page. This field is sortable alphabetically in ascending or descending order. Collection Phase options include:
    • Pre-Enrollment: A grant/project has started, but has not yet enrolled subjects.
    • Enrolling: A grant/project has begun enrolling subjects. Data submission is likely ongoing at this point.
    • Data Analysis: A grant/project has completed enrolling subjects and has completed all data submissions.
    • Funding Completed: A grant/project has reached the project end date.
  • Collection Title
    An editable field with the title of the Collection, which is often the title of the grant associated with the Collection.
  • Grant
    Provides the grant number(s) for the grant(s) associated with the Collection. The field is a hyperlink so clicking on the Grant number will direct the user to the grant information in the NIH Research Portfolio Online Reporting Tools (RePORT) page.
  • Supporting Documentation
    Various documents and materials to enable efficient use of the data by investigators unfamiliar with the project and may include the research protocol, questionnaires, and study manuals.
  • NIH Research Initiative
    NDA Collections may be organized by scientific similarity into NIH Research Initiatives, to facilitate query tool user experience. NIH Research Initiatives map to one or multiple Funding Opportunity Announcements.
  • Permission Group
    Access to shared record-level data in NDA is provisioned at the level of a Permission Group. NDA Permission Groups consist of one or multiple NDA Collections that contain data with the same subject consents.
  • Planned Enrollment
    Number of human subject participants to be enrolled in an NIH-funded clinical research study. The data is provided in competing applications and annual progress reports.
  • Actual Enrollment
    Number of human subjects enrolled in an NIH-funded clinical research study. The data is provided in annual progress reports.
  • NDA Collection
    A virtual container and organization structure for data and associated documentation from one grant or one large project/consortium. It contains tools for tracking data submission and allows investigators to define a wide array of other elements that provide context for the data, including all general information regarding the data and source project, experimental parameters used to collect any event-based data contained in the Collection, methods, and other supporting documentation. They also allow investigators to link underlying data to an NDA Study, defining populations and subpopulations specific to research aims.
  • Data Use Limitations
    Data Use Limitations (DULs) describe the appropriate secondary use of a dataset and are based on the original informed consent of a research participant. NDA only accepts consent-based data use limitations defined by the NIH Office of Science Policy.
  • Total Subjects Shared
    The total number of unique subjects for whom data have been shared and are available for users with permission to access data.
IDNameCreated DateStatusType
112UCLA-Cincinnati EEG11/18/2013ApprovedEEG
117Boston EEGs01/09/2014ApprovedEEG
118Houston EEGs01/09/2014ApprovedEEG
120Cincinnati EEGs01/13/2014ApprovedEEG

NDA Help Center

Collection - Experiments

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

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

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

Frequently Asked Questions

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

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

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


  • 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.
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

NDA Help Center

Collection - Shared Data

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

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

Frequently Asked Questions

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


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

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


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

PubMed IDStudyTitleJournalAuthorsDateStatus
37119787Create StudyEpilepsy Severity Is Associated With Head Circumference and Growth Rate in Infants With Tuberous Sclerosis Complex.Pediatric neurologyLevine, 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 GroupJuly 1, 2023Not Determined
36394118Create StudyTubers Affecting the Fusiform Face Area Are Associated with Autism Diagnosis.Annals of neurologyCohen, 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 GroupMarch 1, 2023Not Determined
35729081Create StudyLimited 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 NeuroimagingNijman, 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 GroupSeptember 1, 2022Not Determined
34668231Create StudyProfile of Autism Spectrum Disorder in Tuberous Sclerosis Complex: Results from a Longitudinal, Prospective, Multisite Study.Annals of neurologyCapal, 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 GroupDecember 1, 2021Not Determined
34343869Create StudyEpilepsy Is Heterogeneous in Early-Life Tuberous Sclerosis Complex.Pediatric neurologyIhnen, 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 groupOctober 1, 2021Not Determined
33410532Create StudyTuber Locations Associated with Infantile Spasms Map to a Common Brain Network.Annals of neurologyCohen, 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 GroupApril 1, 2021Not Determined
33011641Create StudyEpilepsy Risk Prediction Model for Patients With Tuberous Sclerosis Complex.Pediatric neurologyFarach, 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 GroupDecember 1, 2020Not Determined
32927206Create StudyScalp EEG interictal high frequency oscillations as an objective biomarker of infantile spasms.Clinical neurophysiology : official journal of the International Federation of Clinical NeurophysiologyNariai, 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 YNovember 1, 2020Not Determined
32418847Create StudyPilot Study of Neurodevelopmental Impact of Early Epilepsy Surgery in Tuberous Sclerosis Complex.Pediatric neurologyGrayson, 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 GroupAugust 2020Not Determined
32348367Create StudyDeep learning in rare disease. Detection of tubers in tuberous sclerosis complex.PloS oneSánchez 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 GroupJanuary 2020Not Determined
32133630Create StudyScalp electroencephalographic spikes predict impending epilepsy in tuberous sclerosis complex infants: A longitudinal observational study.EpilepsiaMolinero, Isaac; Ferastraoaru, Victor; Boro, Alexis; Moshé, Solomon LApril 1, 2020Not Determined
31864941Create StudyLanguage predictors of autism spectrum disorder in young children with tuberous sclerosis complex.Epilepsy & behavior : E&BSchoenberger, 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 AFebruary 2020Not Determined
31838998Create StudyEarly white matter development is abnormal in tuberous sclerosis complex patients who develop autism spectrum disorder.Journal of neurodevelopmental disordersProhl, 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 GroupDecember 2019Not Determined
31812987Create StudyThe 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 KApril 14, 2020Not Determined
31811616Create StudyEEG Spectral Features in Sleep of Autism Spectrum Disorders in Children with Tuberous Sclerosis Complex.Journal of autism and developmental disordersCook, 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 GroupMarch 1, 2020Not Determined
31691264Create StudyScalp EEG spikes predict impending epilepsy in TSC infants: A longitudinal observational study.EpilepsiaWu, 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 MartinaDecember 2019Not Determined
31569042Create StudyProspective observational study: Fast ripple localization delineates the epileptogenic zone.Clinical neurophysiology : official journal of the International Federation of Clinical NeurophysiologyNariai 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 JYNovember 2019Not Determined
31554896Create StudyExtra-axonal restricted diffusion as an in-vivo marker of reactive microglia.Scientific reportsTaquet, Maxime; Jankovski, Aleksandar; Rensonnet, Gaëtan; Jacobs, Damien; des Rieux, Anne; Macq, Benoît; Warfield, Simon K; Scherrer, BenoîtSeptember 2019Not Determined
31417372Create StudyReproducibility of Structural and Diffusion Tensor Imaging in the TACERN Multi-Center Study.Frontiers in integrative neuroscienceProhl, 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 KJanuary 2019Not Determined
31353853Create StudyWhite matter mean diffusivity correlates with myelination in tuberous sclerosis complex.Annals of clinical and translational neurologyPeters 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 SKJuly 2019Not Determined
31304656Create StudyResting-State fMRI Networks in Children with Tuberous Sclerosis Complex.Journal of neuroimaging : official journal of the American Society of NeuroimagingAhtam, 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 GroupNovember 2019Not Determined
31297797Create StudyIncreased electroencephalography connectivity precedes epileptic spasm onset in infants with tuberous sclerosis complex.EpilepsiaDavis, 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 NetworkAugust 2019Not Determined
31261349Create StudyLesion-Constrained Electrical Source Imaging: A Novel Approach in Epilepsy Surgery for Tuberous Sclerosis Complex.Journal of clinical neurophysiology : official publication of the American Electroencephalographic SocietyPeters, 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 KJanuary 2020Not Determined
31018109Create StudyGenetic Etiologies, Diagnosis, and Treatment of Tuberous Sclerosis Complex.Annual review of genomics and human geneticsSalussolia, Catherine L; Klonowska, Katarzyna; Kwiatkowski, David J; Sahin, MustafaAugust 2019Not Determined
31005478Create StudyTuberous Sclerosis Complex Genotypes and Developmental Phenotype.Pediatric neurologyFarach LS, Pearson DA, Woodhouse JP, Schraw JM, Sahin M, Krueger DA, Wu JY, Bebin EM, Lupo PJ, Au KS, Northrup H, July 2019Not Determined
30945897Create StudyImpacting development in infants with tuberous sclerosis complex: Multidisciplinary research collaboration.The American psychologistWilliams 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 2019Not Determined
30564771Create StudyInterrater reliability in visual identification of interictal high-frequency oscillations on electrocorticography and scalp EEG.Epilepsia openNariai, Hiroki; Wu, Joyce Y; Bernardo, Danilo; Fallah, Aria; Sankar, Raman; Hussain, Shaun ADecember 2018Not Determined
30443929Create StudyMotion-robust diffusion compartment imaging using simultaneous multi-slice acquisition.Magnetic resonance in medicineMarami B, Scherrer B, Khan S, Afacan O, Prabhu SP, Sahin M, Warfield SK, Gholipour AMay 2019Not Determined
30441054Create StudyAutomated 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 ConferenceCharupanit K, Nunez MD, Bernardo D, Bebin M, Krueger DA, Northrup H, Sahin M, Wu JY, Lopour BAJuly 2018Not Determined
30424962Create StudyLongitudinal Effects of Everolimus on White Matter Diffusion in Tuberous Sclerosis Complex.Pediatric neurologyPeters, 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 AJanuary 2019Not Determined
30296632Create StudyHigh vigabatrin dosage is associated with lower risk of infantile spasms relapse among children with tuberous sclerosis complex.Epilepsy researchHussain SA, Schmid E, Peters JM, Goyal M, Bebin EM, Northrup H, Sahin M, Krueger DA, Wu JY, December 2018Not Determined
30282007Create StudyTowards microstructure fingerprinting: Estimation of tissue properties from a dictionary of Monte Carlo diffusion MRI simulations.NeuroImageRensonnet, Gaëtan; Scherrer, Benoît; Girard, Gabriel; Jankovski, Aleksandar; Warfield, Simon K; Macq, Benoît; Thiran, Jean-Philippe; Taquet, MaximeJanuary 2019Not Determined
30255984Create StudyGenetics, genomics, and genotype-phenotype correlations of TSC: Insights for clinical practice.American journal of medical genetics. Part C, Seminars in medical geneticsPeron, Angela; Au, Kit Sing; Northrup, HopeSeptember 2018Not Determined
30149055Create StudyA unified circuit for social behavior.Neurobiology of learning and memoryModi, Meera E; Sahin, MustafaNovember 2019Not Determined
30120133Create StudyRemoving high-frequency oscillations: A prospective multicenter study on seizure outcome.NeurologyJacobs, Julia; Wu, Joyce Y; Perucca, Piero; Zelmann, Rina; Mader, Malenka; Dubeau, Francois; Mathern, Gary W; Schulze-Bonhage, Andreas; Gotman, JeanSeptember 11, 2018Not Determined
30117265Create StudyA clinical update on tuberous sclerosis complex-associated neuropsychiatric disorders (TAND).American journal of medical genetics. Part C, Seminars in medical geneticsde Vries, Petrus J; Wilde, Lucy; de Vries, Magdalena C; Moavero, Romina; Pearson, Deborah A; Curatolo, PaoloSeptember 2018Not Determined
30101418Create StudyThe Way Forward for Mechanism-Based Therapeutics in Genetically Defined Neurodevelopmental Disorders.Clinical pharmacology and therapeuticsModi, Meera E; Sahin, MustafaOctober 2018Not Determined
30041061Create StudyExploring early human brain development with structural and physiological neuroimaging.NeuroImageVasung, Lana; Abaci Turk, Esra; Ferradal, Silvina L; Sutin, Jason; Stout, Jeffrey N; Ahtam, Banu; Lin, Pei-Yi; Grant, P EllenFebruary 2019Not Determined
29939236Create StudyCorpus 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 SKOctober 2018Not Determined
29687739Create StudyVigabatrin for Epileptic Spasms and Tonic Seizures in Tuberous Sclerosis Complex.Journal of child neurologyVan Der Poest Clement EA, Sahin M, Peters JMJuly 2018Not Determined
29673547Create StudyVisual 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 NeurophysiologyBernardo D, Nariai H, Hussain SA, Sankar R, Salamon N, Krueger DA, Sahin M, Northrup H, Bebin EM, Wu JY, July 2018Not Determined
29572283Create StudyCerebellar volume as an imaging marker of development in infants with tuberous sclerosis complex.NeurologySrivastava, Siddharth; Prohl, Anna K; Scherrer, Benoit; Kapur, Kush; Krueger, Darcy A; Warfield, Simon K; Sahin, Mustafa; TACERN Study GroupApril 24, 2018Not Determined
29490194Create StudyAbnormal mTOR Activation in Autism.Annual review of neuroscienceWinden, Kellen D; Ebrahimi-Fakhari, Darius; Sahin, MustafaJuly 2018Not Determined
29101226Create StudyPresentation and Diagnosis of Tuberous Sclerosis Complex in Infants.PediatricsDavis, 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 NetworkDecember 2017Not Relevant
28844798Create StudyUtility of the Autism Observation Scale for Infants in Early Identification of Autism in Tuberous Sclerosis Complex.Pediatric neurologyCapal, 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 GroupOctober 2017Relevant
28801253Create StudyInvestigating the maturation of microstructure and radial orientation in the preterm human cortex with diffusion MRI.NeuroImageEaton-Rosen, Zach; Scherrer, Benoit; Melbourne, Andrew; Ourselin, Sebastien; Neil, Jeffrey J; Warfield, Simon KNovember 2017Not Determined
28714064Create StudyAssessing the validity of the approximation of diffusion-weighted-MRI signals from crossing fascicles by sums of signals from single fascicles.Magnetic resonance in medicineRensonnet G, Scherrer B, Warfield SK, Macq B, Taquet MApril 2018Not Determined
28649286Create StudyAutism spectrum disorder and epileptic encephalopathy: common causes, many questions.Journal of neurodevelopmental disordersSrivastava S, Sahin MJanuary 2017Not Relevant
28644979Create StudyIntraoperative fast ripples independently predict postsurgical epilepsy outcome: Comparison with other electrocorticographic phenomena.Epilepsy researchHussain SA, Mathern GW, Hung P, Weng J, Sankar R, Wu JYSeptember 2017Not Relevant
28643795Create StudyThe genomic landscape of tuberous sclerosis complex.Nature communicationsMartin 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 JPJune 2017Not Relevant
28457992Create StudyInfluence of seizures on early development in tuberous sclerosis complex.Epilepsy & behavior : E&BCapal, 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 GroupMay 2017Not Relevant
28127590Create StudyMotion-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 InterventionMarami B, Scherrer B, Afacan O, Warfield SK, Gholipour AOctober 2016Not Determined
27956565Create StudyRandomized placebo-controlled study of lovastatin in children with neurofibromatosis type 1.NeurologyPayne, 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 ConsortiumDecember 13, 2016Not Determined
27834639Create StudyMotion-Robust Diffusion-Weighted Brain MRI Reconstruction Through Slice-Level Registration-Based Motion Tracking.IEEE transactions on medical imagingMarami B, Scherrer B, Afacan O, Erem B, Warfield SK, Gholipour AOctober 2016Not Determined
27815402Create StudyLong-term treatment of epilepsy with everolimus in tuberous sclerosis.NeurologyKrueger, Darcy A; Wilfong, Angus A; Mays, Maxwell; Talley, Christina M; Agricola, Karen; Tudor, Cindy; Capal, Jamie; Holland-Bouley, Katherine; Franz, David NealDecember 6, 2016Not Determined
27647682Create StudyActive delineation of Meyer''s loop using oriented priors through MAGNEtic tractography (MAGNET).Human brain mappingChamberland, Maxime; Scherrer, Benoit; Prabhu, Sanjay P; Madsen, Joseph; Fortin, David; Whittingstall, Kevin; Descoteaux, Maxime; Warfield, Simon KJanuary 2017Relevant
27267556Create StudyAdvances and Future Directions for Tuberous Sclerosis Complex Research: Recommendations From the 2015 Strategic Planning Conference.Pediatric neurologySahin 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 2016Not Relevant
27199644Create StudyEditorial: Essential Pathways and Circuits of Autism Pathogenesis.Frontiers in neuroscienceDölen, Gül; Sahin, MustafaJanuary 2016Not Relevant
26715604Create StudyCongenital disorders of autophagy: an emerging novel class of inborn errors of neuro-metabolism.Brain : a journal of neurologyEbrahimi-Fakhari D, Saffari A, Wahlster L, Lu J, Byrne S, Hoffmann GF, Jungbluth H, Sahin MFebruary 2016Not Relevant
26632048Create StudySuper-resolution reconstruction in frequency, image, and wavelet domains to reduce through-plane partial voluming in MRI.Medical physicsGholipour A, Afacan O, Aganj I, Scherrer B, Prabhu SP, Sahin M, Warfield SKDecember 2015Not Determined
26529580Create StudyImproved fidelity of brain microstructure mapping from single-shell diffusion MRI.Medical image analysisTaquet M, Scherrer B, Boumal N, Peters JM, Macq B, Warfield SKDecember 2015Not Determined
26498039Create StudyClinical Electroencephalographic Biomarker for Impending Epilepsy in Asymptomatic Tuberous Sclerosis Complex Infants.Pediatric neurologyWu JY, Peters JM, Goyal M, Krueger D, Sahin M, Northrup H, Au KS, Cutter G, Bebin EMJanuary 2016Not Determined
26472761Create StudyGenes, circuits, and precision therapies for autism and related neurodevelopmental disorders.Science (New York, N.Y.)Sahin, Mustafa; Sur, MrigankaNovember 2015Not Determined
26432846Create StudyTubers are neither static nor discrete: Evidence from serial diffusion tensor imaging.NeurologyPeters 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 ANovember 3, 2015Not Determined
26362832Create StudyCharacterizing brain tissue by assessment of the distribution of anisotropic microstructural environments in diffusion-compartment imaging (DIAMOND).Magnetic resonance in medicineScherrer B, Schwartzman A, Taquet M, Sahin M, Prabhu SP, Warfield SKSeptember 2016Not Determined
26303409Create StudyCerebellar Development and Autism Spectrum Disorder in Tuberous Sclerosis Complex.Journal of child neurologySundberg M, Sahin MDecember 2015Not Relevant
26167096Create StudyAccelerated High Spatial Resolution Diffusion-Weighted Imaging.Information processing in medical imaging : proceedings of the ... conferenceScherrer B, Afacan O, Taquet M, Prabhu SP, Gholipour A, Warfield SK2015Not Determined
26022167Create StudyTuberous sclerosis complex.Pediatric clinics of North AmericaDiMario FJ, Sahin M, Ebrahimi-Fakhari DJune 2015Not Relevant
25986747Create StudyTuberous Sclerosis: A New Frontier in Targeted Treatment of Autism.Neurotherapeutics : the journal of the American Society for Experimental NeuroTherapeuticsDavis, Peter E; Peters, Jurriaan M; Krueger, Darcy A; Sahin, MustafaJuly 2015Not Determined
25862116Create StudyMelatonin improves sleep in children with epilepsy: a randomized, double-blind, crossover study.Sleep medicineJain SV, Horn PS, Simakajornboon N, Beebe DW, Holland K, Byars AW, Glauser TAMay 2015Not Determined
25817702Create StudyLongitudinal changes in diffusion properties in white matter pathways of children with tuberous sclerosis complex.Pediatric neurologyBaumer FM, Song JW, Mitchell PD, Pienaar R, Sahin M, Grant PE, Takahashi EJune 2015Not Determined
25750257Create StudyAltered 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 PMay 2016Not Determined
25695134Create StudyAutism and the synapse: emerging mechanisms and mechanism-based therapies.Current opinion in neurologyEbrahimi-Fakhari D, Sahin MApril 2015Not Relevant
25532776Create StudyTuberous sclerosis associated neuropsychiatric disorders (TAND) and the TAND Checklist.Pediatric neurologyde Vries PJ, Whittemore VH, Leclezio L, Byars AW, Dunn D, Ess KC, Hook D, King BH, Sahin M, Jansen AJanuary 2015Not Determined
25385396Create StudyHypsarrhythmia assessment exhibits poor interrater reliability: a threat to clinical trial validity.EpilepsiaHussain SA, Kwong G, Millichap JJ, Mytinger JR, Ryan N, Matsumoto JH, Wu JY, Lerner JT, Sankar RJanuary 2015Not Determined
25374355Create StudyThe neurology of mTOR.NeuronLipton JO, Sahin MOctober 2014Not Determined
24830765Create StudyClobazam: effect on frequency of seizures and safety profile in different subgroups of children with epilepsy.Pediatric neurologyKlehm 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 TJuly 2014Not Determined
24684014Create StudyReliable selection of the number of fascicles in diffusion images by estimation of the generalization error.Information processing in medical imaging : proceedings of the ... conferenceScherrer B, Taquet M, Warfield SK2013Not Determined
24505801Create StudyCharacterizing 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 InterventionScherrer B, Schwartzman A, Taquet M, Prabhu SP, Sahin M, Akhondi-Asl A, Warfield SK2013Not Determined
24505728Create StudyEstimation 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 InterventionTaquet M, Scherrer B, Boumal N, Macq B, Warfield SK2013Not Determined
24489482Create StudyDiffusion tensor imaging and related techniques in tuberous sclerosis complex: review and future directions.Future neurologyPeters JM, Taquet M, Prohl AK, Scherrer B, van Eeghen AM, Prabhu SP, Sahin M, Warfield SKSeptember 2013Not Determined
24486221Create StudyMechanism-based treatment in tuberous sclerosis complex.Pediatric neurologyJülich K, Sahin MApril 2014Not Determined
24446954Create StudyTreatment of infantile spasms with very high dose prednisolone before high dose adrenocorticotropic hormone.EpilepsiaHussain, Shaun A; Shinnar, Shlomo; Kwong, Grace; Lerner, Jason T; Matsumoto, Joyce H; Wu, Joyce Y; Shields, W Donald; Sankar, RamanJanuary 1, 2014Not Determined
24372698Create StudyInsult to injury: transient encephalopathy in a brain-injured adolescent.Journal of paediatrics and child healthPeters JM, Fernández ISMay 2014Not Determined
24235301Create StudyA mathematical framework for the registration and analysis of multi-fascicle models for population studies of the brain microstructure.IEEE transactions on medical imagingTaquet M, Scherrer B, Commowick O, Peters JM, Sahin M, Macq B, Warfield SKFebruary 2014Not Determined
23991336Create StudyContinuous Spikes and Waves during Sleep: Electroclinical Presentation and Suggestions for Management.Epilepsy research and treatmentSánchez Fernández, Iván; Chapman, Kevin E; Peters, Jurriaan M; Harini, Chellamani; Rotenberg, Alexander; Loddenkemper, TobiasJanuary 1, 2013Not Determined
23953953Create StudyLong-term response to high-dose diazepam treatment in continuous spikes and waves during sleep.Pediatric neurologySánchez Fernández I, Peters JM, An S, Bergin AM, Takeoka M, Rotenberg A, Kothare SV, Riviello JJ, Loddenkemper TSeptember 2013Not Determined
23859506Create Study[The brain functional network of children with autism: redundancy and disconnection].Medecine sciences : M/STaquet, Maxime; Peters, Jurriaan MJune 2013Not Determined
23852707Create StudyManagement of CNS-related Disease Manifestations in Patients With Tuberous Sclerosis Complex.Current treatment options in neurologyKrueger DAOctober 2013Not Determined
23744673Create StudySimultaneous truth and performance level estimation through fusion of probabilistic segmentations.IEEE transactions on medical imagingAkhondi-Asl, Alireza; Warfield, Simon KOctober 2013Not Determined
23445896Create StudyBrain functional networks in syndromic and non-syndromic autism: a graph theoretical study of EEG connectivity.BMC medicinePeters JM, Taquet M, Vega C, Jeste SS, Fernández IS, Tan J, Nelson CA, Sahin M, Warfield SK2013Not Determined
23291250Create StudyAutomated quantification of spikes.Epilepsy & behavior : E&BChavakula V, Sánchez Fernández I, Peters JM, Popli G, Bosl W, Rakhade S, Rotenberg A, Loddenkemper TFebruary 2013Not Determined

NDA Help Center

Collection - Publications

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

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

Frequently Asked Questions

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


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

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

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

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

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

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

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

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

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

Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Mullen Scales of Early Learning info icon
Medical History info icon
Demographics info icon
Child Behavior Checklist (CBCL) info icon
Early Social Communication Scales (ESCS) info icon
Preschool Language Scale (PLS) info icon
Physical Exam info icon
Classification of Seizures info icon
Summary of Seizure Diary counts info icon
Vineland (Parent and Caregiver) info icon
Imaging (Structural, fMRI, DTI, PET, microscopy) info icon
EEG info icon
Structure not yet defined
No Status history for this Data Expected has been recorded yet

NDA Help Center

Collection - Data Expected

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

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

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

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

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

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

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

Frequently Asked Questions

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


  • 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.

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Associated Studies

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

Study NameAbstractCollection/Study SubjectsData UsageState
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.158/17423Secondary AnalysisShared
The importance of low IQ to early diagnosis of autismSome 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. 158/6323Secondary AnalysisShared
Derivation of Brain Structure Volumes from MRI Neuroimages hosted by NDAR using C-PAC pipeline and ANTsAn 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.6/1428Secondary AnalysisShared
Derivation of Quality Measures for Structural Images by Neuroimaging PipelinesUsing 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.6/423Secondary AnalysisShared
Derivation of Brain Structure Volumes from MRI Neuroimages hosted by NDAR using NITRC-CEA 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.**6/356Secondary AnalysisShared
A human craniofacial life-course: cross-sectional morphological covariations during postnatal growth, adolescence, and agingCovariations 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.1/308Secondary AnalysisShared
* Data not on individual level

NDA Help Center

Collection - Associated Studies

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

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

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

Frequently Asked Questions

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


  • 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.