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1 Numbers reported are subjects by age
New Trial
New Project

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

Please select an experiment type below

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

The table search feature is case insensitive and targets the experiment id, experiment name and experiment type columns. The experiment id is searched only when the search term entered is a number, and filtered using a startsWith comparison. When the search term is not numeric the experiment name is used to filter the results.
SelectExperiment IdExperiment NameExperiment Type
Created On
24HI-NGS_R1Omics02/16/2011
475MB1-10 (CHOP)Omics06/07/2016
490Discovery and CRISPR validation of genetic factors associated with antipsychotic-induced weight gain and cardiometabolic riskOmics07/07/2016
501PharmacoBOLD Resting StatefMRI07/27/2016
506PVPREFOmics08/05/2016
509ABC-CT Resting v2EEG08/18/2016
13Comparison of FI expression in Autistic and Neurotypical Homo SapiensOmics12/28/2010
18AGRE/Broad Affymetrix 5.0 Genotype ExperimentOmics01/06/2011
22Stitching PCR SequencingOmics02/14/2011
26ASD_MethylationOmics03/01/2011
29Microarray family 03 (father, mother, sibling)Omics03/24/2011
37Standard paired-end sequencing of BCRsOmics04/19/2011
38Illumina Mate-Pair BCR sequencingOmics04/19/2011
39Custom Jumping LibrariesOmics04/19/2011
40Custom CapBPOmics04/19/2011
41ImmunofluorescenceOmics05/11/2011
43Autism brain sample genotyping, IlluminaOmics05/16/2011
47ARRA Autism Sequencing Collaboration at Baylor. SOLiD 4 SystemOmics08/01/2011
53AGRE Omni1-quadOmics10/11/2011
59AGP genotypingOmics04/03/2012
60Ultradeep 454 sequencing of synaptic genes from postmortem cerebella of individuals with ASD and neurotypical controlsOmics06/23/2012
63Microemulsion PCR and Targeted Resequencing for Variant Detection in ASDOmics07/20/2012
76Whole Genome Sequencing in Autism FamiliesOmics01/03/2013
519RestingfMRI11/08/2016
90Genotyped IAN SamplesOmics07/09/2013
91NJLAGS Axiom Genotyping ArrayOmics07/16/2013
93AGP genotyping (CNV)Omics09/06/2013
106Longitudinal Sleep Study. H20 200. Channel set 2EEG11/07/2013
107Longitudinal Sleep Study. H20 200. Channel set 3EEG11/07/2013
108Longitudinal Sleep Study. AURA 200EEG11/07/2013
105Longitudinal Sleep Study. H20 200. Channel set 1EEG11/07/2013
109Longitudinal Sleep Study. AURA 400EEG11/07/2013
116Gene Expression Analysis WG-6Omics01/07/2014
131Jeste Lab UCLA ACEii: Charlie Brown and Sesame Street - Project 1Eye Tracking02/27/2014
132Jeste Lab UCLA ACEii: Animacy - Project 1Eye Tracking02/27/2014
133Jeste Lab UCLA ACEii: Mom Stranger - Project 2Eye Tracking02/27/2014
134Jeste Lab UCLA ACEii: Face Emotion - Project 3Eye Tracking02/27/2014
145AGRE/FMR1_Illumina.JHUOmics04/14/2014
146AGRE/MECP2_Sanger.JHUOmics04/14/2014
147AGRE/MECP2_Junior.JHUOmics04/14/2014
151Candidate Gene Identification in familial AutismOmics06/09/2014
152NJLAGS Whole Genome SequencingOmics07/01/2014
154Math Autism Study - Vinod MenonfMRI07/15/2014
155RestingfMRI07/25/2014
156SpeechfMRI07/25/2014
159EmotionfMRI07/25/2014
160syllable contrastEEG07/29/2014
167School-age naturalistic stimuliEye Tracking09/19/2014
44AGRE/Broad Affymetrix 5.0 Genotype ExperimentOmics06/27/2011
45Exome Sequencing of 20 Sporadic Cases of Autism Spectrum DisorderOmics07/15/2011
Collection - Add Experiment
Add Supporting Documentation
Select File

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

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Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
Neurobiological and Behavioral Risk Mechanisms of Youth Avoidant/Restrictive Eating Trajectories
Jennifer Thomas 
Avoidant and restrictive eating is common across youth mental health disorders, and is prospectively associated with poor growth, nutritional deficiencies, psychiatric symptoms, and psychosocial impairment. The newly introduced DSM-5 Avoidant Restrictive Food Intake Disorder includes some but not all avoidant and restrictive eating presentations. Initial evidence suggests that avoidant and restrictive eating is highly heterogeneous, with poor intake characterized by choking or vomiting phobias loss of interest in feeding and or extreme food selectivity. Moreover, very little is known about its pathophysiology or long- term outcomes. Our study will leverage unique and complementary contributions of an international team with expertise in clinical psychology, child psychiatry, pediatrics, endocrinology, biostatistics and functional neuroimaging to investigate risk mechanisms and longitudinal outcomes of avoidant and restrictive eating. We will establish a clinical cohort of children aged 8-18 years n 100 and healthy controls n 50 matched for sex, age, and Tanner stage to investigate how, across units of analysis, RDoC constructs contribute to avoidant and restrictive eating. First, we hypothesize that Negative Valence acute threat fear over-activity circuits amygdala activation during a validated fear paradigm hormones cortisol and oxytocin physiology heart rate and skin conductance self report fear and trait anxiety will correlate with phobic features. Second, we hypothesize that Arousal Regulatory homeostasis dysfunction circuits hypothalamus and insula hypoactivation during a validated food paradigm hormones PYY, CKK, BDNF self report hunger and fullness will correlate with low-appetite features. Third, we will explore Cognitive Systems perception over-sensitivity circuits hyperactivation in primary taste cortex during a taste paradigm hormones PYY self report sensory profile behavior taste and odor threshold, discrimination, and detection physiology taste perception and its correlation with sensory features. We expect that the clinical cohort will have greater dysfunction across these 3 constructs than controls. We will then use latent class factor models to determine whether avoidant restrictive eating comprises multiple distinct phenotypes as prior literature assumes or a single phenotype with 3 overlapping dimensions as we hypothesize . We will follow our clinical cohort for 2 years to evaluate a the persistence of avoidant restrictive eating, growth, and psychopathology outcomes and b if dysfunction in all 3 RDoC constructs predicts outcomes. This study will be innovative and unique in 3 ways 1 by providing an empirical investigation of an understudied clinical presentation 2 by providing the first investigation of pathophysiology and risk mechanisms and 3 by characterizing poorly understood longitudinal outcomes. In sum, conceptualizing avoidant restrictive eating within an RDoC framework that integrates mind, brain, and behavior has great potential to reduce the burden of feeding disorders by informing nosology, treatment, and prevention.
NIMH Data Archive
01/12/2017
Funding Completed
Close Out
No
$2,690,870.00
134
10.15154/k4ek-kw81
Loading Chart...
NIH - Extramural None



R01MH108595-01 Neurobiological and Behavioral Risk Mechanisms of Youth Avoidant/Restrictive Eating Trajectories 03/15/2016 02/28/2021 02/28/2021 150 134 MASSACHUSETTS GENERAL HOSPITAL $2,690,870.00

helpcenter.collection.general-tab

NDA Help Center

Collection - General Tab

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

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

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

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

Blinded Clinical Trial Status:

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

Funding Source

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

Supporting Documentation

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

Grant Information

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

Clinical Trials

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

Frequently Asked Questions

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

Glossary

  • Administrator Privilege
    A privilege provided to a user associated with an NDA Collection or NDA Study whereby that user can perform a full range of actions including providing privileges to other users.
  • Collection Owner
    Generally, the Collection Owner is the contact PI listed on a grant. Only one NDA user is listed as the Collection owner. Most automated emails are primarily sent to the Collection Owner.
  • Collection Phase
    The Collection Phase provides information on data submission as opposed to grant/project completion so while the Collection phase and grant/project phase may be closely related they are often different. Collection users with Administrative Privileges are encouraged to edit the Collection Phase. The Program Officer as listed in eRA (for NIH funded grants) may also edit this field. Changes must be saved by clicking the Save button at the bottom of the page. This field is sortable alphabetically in ascending or descending order. Collection Phase options include:
    • Pre-Enrollment: A grant/project has started, but has not yet enrolled subjects.
    • Enrolling: A grant/project has begun enrolling subjects. Data submission is likely ongoing at this point.
    • Data Analysis: A grant/project has completed enrolling subjects and has completed all data submissions.
    • Funding Completed: A grant/project has reached the project end date.
  • Collection Title
    An editable field with the title of the Collection, which is often the title of the grant associated with the Collection.
  • Grant
    Provides the grant number(s) for the grant(s) associated with the Collection. The field is a hyperlink so clicking on the Grant number will direct the user to the grant information in the NIH Research Portfolio Online Reporting Tools (RePORT) page.
  • Supporting Documentation
    Various documents and materials to enable efficient use of the data by investigators unfamiliar with the project and may include the research protocol, questionnaires, and study manuals.
  • NIH Research Initiative
    NDA Collections may be organized by scientific similarity into NIH Research Initiatives, to facilitate query tool user experience. NIH Research Initiatives map to one or multiple Funding Opportunity Announcements.
  • Permission Group
    Access to shared record-level data in NDA is provisioned at the level of a Permission Group. NDA Permission Groups consist of one or multiple NDA Collections that contain data with the same subject consents.
  • Planned Enrollment
    Number of human subject participants to be enrolled in an NIH-funded clinical research study. The data is provided in competing applications and annual progress reports.
  • Actual Enrollment
    Number of human subjects enrolled in an NIH-funded clinical research study. The data is provided in annual progress reports.
  • NDA Collection
    A virtual container and organization structure for data and associated documentation from one grant or one large project/consortium. It contains tools for tracking data submission and allows investigators to define a wide array of other elements that provide context for the data, including all general information regarding the data and source project, experimental parameters used to collect any event-based data contained in the Collection, methods, and other supporting documentation. They also allow investigators to link underlying data to an NDA Study, defining populations and subpopulations specific to research aims.
  • Data Use Limitations
    Data Use Limitations (DULs) describe the appropriate secondary use of a dataset and are based on the original informed consent of a research participant. NDA only accepts consent-based data use limitations defined by the NIH Office of Science Policy.
  • Total Subjects Shared
    The total number of unique subjects for whom data have been shared and are available for users with permission to access data.
IDNameCreated DateStatusType
1708Food cue task03/09/2021ApprovedfMRI
2236ARFID fear task04/13/2023ApprovedfMRI
2237ARFID taste task04/13/2023ApprovedfMRI
helpcenter.collection.experiments-tab

NDA Help Center

Collection - Experiments

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

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

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

Frequently Asked Questions

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

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

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

Glossary

  • Experiment Status
    An Experiment must be Approved before data using the associated Experiment_ID may be uploaded.
  • Experiment ID
    The ID number automatically generated by NDA which must be included in the appropriate file when uploading data to link the Experiment Definition to the subject record.
Beck Anxiety Inventory Clinical Assessments 132
Burghart Sniffin' Sticks Identification Test Clinical Assessments 104
Change in Diagnosis Form Clinical Assessments 94
Clinical Impairment Assessment Clinical Assessments 130
Demographics Form Short Clinical Assessments 134
Eating Disorder Assessment for DSM-5 Clinical Assessments 134
Eating Disorder Examination Questionnaire Clinical Assessments 134
Hormone Values Clinical Assessments 130
How I Feel Questionnaire Clinical Assessments 91
Kiddie-Sads Anorexia Bulimia Clinical Assessments 134
Kiddie-Sads Summary Diagnoses Clinical Assessments 134
Kiddie-Sads-Present and Lifetime Version (K-SADS-PL) Clinical Assessments 134
Longitudinal Interval Follow-Up Evaluation Eating and Feeding Disorders Version (LIFE-EAT 3) Clinical Assessments 121
Prototype Matching Clinical Assessments 131
Research Subject Clinical Assessments 134
Sensory Profile Adult Clinical Assessments 131
State-Trait Anxiety Inventory for Adults Clinical Assessments 41
Strengths and Difficulties Questionnaire Clinical Assessments 130
Taste Magnitude Scale Clinical Assessments 121
Three-Factor Eating Questionnaire Clinical Assessments 130
helpcenter.collection.shared-data-tab

NDA Help Center

Collection - Shared Data

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

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

Frequently Asked Questions

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

Glossary

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

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

Publications

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

PubMed IDStudyTitleJournalAuthorsDateStatus
39992069Create StudyFrequency and Predictors of Shape/Weight Concerns and Objective Binge Eating in Avoidant/Restrictive Food Intake Disorder (ARFID).The International journal of eating disordersKambanis, P Evelyna; Palmer, Lilian P; Jhe, Grace; McPherson, Iman; Graver, Haley; Dalton, Abigail G; Ji, Chunni; Asanza, Elisa; Shabazian, Lauren; Dunford, Ashley; Breithaupt, Lauren; Freizinger, Melissa; Eddy, Kamryn T; Misra, Madhusmita; Micali, Nadia; Holsen, Laura; Lawson, Elizabeth A; Becker, Kendra R; Thomas, Jennifer JMay 1, 2025Not Determined
39964683Create StudyNeural Response to Food Cues in Avoidant/Restrictive Food Intake Disorder.JAMA network openThomas, Jennifer J; Holsen, Laura; Van De Water, Avery L; Becker, Kendra R; Breithaupt, Lauren; Burton-Murray, Helen; Asanza, Elisa; Gydus, Julia; Palmer, Lilian P; Stern, Casey M; Freizinger, Melissa; Shrier, Lydia A; Bern, Elana M; Deckersbach, Thilo; Misra, Madhusmita; Eddy, Kamryn T; Micali, Nadia; Lawson, ElizabethFebruary 3, 2025Not Determined
39821215Create StudyDifferences in Perceived Versus Actual Sensory Perception in Avoidant/Restrictive Food Intake Disorder.The International journal of eating disordersGydus, Julia; Holman, Katherine; Harshman, Stephanie; Stull, Madeline; Kuhnle, Megan; Wons, Olivia; Asanza, Elisa; Hauser, Kristine; Stern, Casey; Becker, Kendra R; Kambanis, P Evelyna; Misra, Madhusmita; Eddy, Kamryn T; Micali, Nadia; Lawson, Elizabeth A; Thomas, Jennifer JApril 1, 2025Not Determined
39676725Create StudyPredictors of Outcome in Cognitive-Behavioral Therapy for Avoidant/Restrictive Food Intake Disorder.The International journal of eating disordersPalmer, Lilian P; Kambanis, P Evelyna; Stern, Casey M; Rossman, Setareh M; Mancuso, Christopher J; Andrea, Alexandrea M; Burton-Murray, Helen; Becker, Kendra R; Breithaupt, Lauren; Freid, Cathryn; Asanza, Elisa; Lawson, Elizabeth A; Eddy, Kamryn T; Thomas, Jennifer JMarch 1, 2025Not Determined
38940228Create StudyMedical Comorbidities, Nutritional Markers, and Cardiovascular Risk Markers in Youth With ARFID.The International journal of eating disordersBurton-Murray, Helen; Sella, Aluma Chovel; Gydus, Julia E; Atkins, Micaela; Palmer, Lilian P; Kuhnle, Megan C; Becker, Kendra R; Breithaupt, Lauren E; Brigham, Kathryn S; Aulinas, Anna; Staller, Kyle; Eddy, Kamryn T; Misra, Madhusmita; Micali, Nadia; Thomas, Jennifer J; Lawson, Elizabeth ANovember 1, 2024Not Determined
38896990Create StudyTrajectory of ghrelin and PYY around a test meal in males and females with avoidant/restrictive food intake disorder versus healthy controls.PsychoneuroendocrinologyRozzell-Voss, Kaitlin N; Becker, Kendra R; Tabri, Nassim; Dreier, Melissa J; Wang, Shirley B; Kuhnle, Megan; Gydus, Julia; Burton-Murray, Helen; Breithaupt, Lauren; Plessow, Franziska; Franko, Debra; Hauser, Kristine; Asanza, Elisa; Misra, Madhusmita; Eddy, Kamryn T; Holsen, Laura; Micali, Nadia; Thomas, Jennifer J; Lawson, Elizabeth ASeptember 1, 2024Not Determined
38702736Create StudyCourse of avoidant/restrictive food intake disorder: Emergence of overvaluation of shape/weight.Journal of eating disordersKambanis, P Evelyna; Mancuso, Christopher J; Becker, Kendra R; Eddy, Kamryn T; Thomas, Jennifer J; De Young, Kyle PMay 3, 2024Not Determined
38366701Create StudyLower region-specific gray matter volume in females with atypical anorexia nervosa and anorexia nervosa.The International journal of eating disordersLyall, Amanda E; Breithaupt, Lauren; Ji, Chunni; Haidar, Anastasia; Kotler, Elana; Becker, Kendra R; Plessow, Franziska; Slattery, Meghan; Thomas, Jennifer J; Holsen, Laura M; Misra, Madhusmita; Eddy, Kamryn T; Lawson, Elizabeth AApril 1, 2024Not Determined
38287459Create StudyAvoidant/restrictive food intake disorder differs from anorexia nervosa in delay discounting.Journal of eating disordersStern, Casey M; McPherson, Iman; Dreier, Melissa J; Coniglio, Kathryn; Palmer, Lilian P; Gydus, Julia; Graver, Haley; Germine, Laura T; Tabri, Nassim; Wang, Shirley B; Breithaupt, Lauren; Eddy, Kamryn T; Thomas, Jennifer J; Plessow, Franziska; Becker, Kendra RJanuary 29, 2024Not Determined
38213085Create StudyCognitive-behavioral therapy for avoidant/restrictive food intake disorder: A proof-of-concept for mechanisms of change and target engagement.The International journal of eating disordersBurton-Murray, Helen; Becker, Kendra R; Breithaupt, Lauren; Gardner, Elizabeth; Dreier, Melissa J; Stern, Casey M; Misra, Madhusmita; Lawson, Elizabeth A; Ljótsson, Brjánn; Eddy, Kamryn T; Thomas, Jennifer JMay 1, 2024Not Determined
37950288Create StudyAnticipatory and consummatory pleasure in avoidant/restrictive food intake disorder.Journal of eating disordersDolan, Sarah C; Kambanis, P Evelyna; Stern, Casey M; Becker, Kendra R; Breithaupt, Lauren; Gydus, Julia; Smith, Sarah; Misra, Madhusmita; Micali, Nadia; Lawson, Elizabeth A; Eddy, Kamryn T; Thomas, Jennifer JNovember 10, 2023Not Determined
37474111Create StudyOxytocin response to food intake in avoidant/restrictive food intake disorder.European journal of endocrinologyAulinas, Anna; Muhammed, Maged; Becker, Kendra R; Asanza, Elisa; Hauser, Kristine; Stern, Casey; Gydus, Julia; Holmes, Tara; Murray, Helen Burton; Breithaupt, Lauren; Micali, Nadia; Misra, Madhusmita; Eddy, Kamryn T; Thomas, Jennifer J; Lawson, Elizabeth AAugust 2, 2023Not Determined
37353543Create StudyNeural activation of regions involved in food reward and cognitive control in young females with anorexia nervosa and atypical anorexia nervosa versus healthy controls.Translational psychiatryEddy, Kamryn T; Plessow, Franziska; Breithaupt, Lauren; Becker, Kendra R; Slattery, Meghan; Mancuso, Christopher J; Izquierdo, Alyssa M; Van De Water, Avery L; Kahn, Danielle L; Dreier, Melissa J; Ebrahimi, Seda; Deckersbach, Thilo; Thomas, Jennifer J; Holsen, Laura M; Misra, Madhusmita; Lawson, Elizabeth AJune 23, 2023Not Determined
37134126Create StudyLower Ghrelin Levels Are Associated With Higher Anxiety Symptoms in Adolescents and Young Adults With Avoidant/Restrictive Food Intake Disorder.The Journal of clinical psychiatryChovel Sella, Aluma; Hadaway, Natalia; Stern, Casey; Becker, Kendra R; Holsen, Laura M; Eddy, Kamryn T; Micali, Nadia; Misra, Madhusmita; Thomas, Jennifer J; Lawson, Elizabeth AMay 3, 2023Not Determined
36640211Create StudyAssessment and Treatment of Avoidant/Restrictive Food Intake Disorder.Current psychiatry reportsKambanis, P Evelyna; Thomas, Jennifer JFebruary 1, 2023Not Determined
36419081Create StudyPreliminary validation of the pica, ARFID and rumination disorder interview ARFID questionnaire (PARDI-AR-Q).Journal of eating disordersBryant-Waugh, Rachel; Stern, Casey M; Dreier, Melissa J; Micali, Nadia; Cooke, Lucy J; Kuhnle, Megan C; Burton Murray, Helen; Wang, Shirley B; Breithaupt, Lauren; Becker, Kendra R; Misra, Madhusmita; Lawson, Elizabeth A; Eddy, Kamryn T; Thomas, Jennifer JNovember 22, 2022Not Determined
36324295Create StudyThe factor structure and validity of a diagnostic interview for avoidant/restrictive food intake disorder in a sample of children, adolescents, and young adults.The International journal of eating disordersCooper-Vince, Christine E; Nwaka, Chika; Eddy, Kamryn T; Misra, Madhusmita; Hadaway, Natalia A; Becker, Kendra R; Lawson, Elizabeth A; Cooke, Lucy; Bryant-Waugh, Rachel; Thomas, Jennifer J; Micali, NadiaNovember 1, 2022Not Determined
35848094Create StudyDifferential comorbidity profiles in avoidant/restrictive food intake disorder and anorexia nervosa: Does age play a role?The International journal of eating disordersKambanis, P Evelyna; Harshman, Stephanie G; Kuhnle, Megan C; Kahn, Danielle L; Dreier, Melissa J; Hauser, Kristine; Slattery, Meghan; Becker, Kendra R; Breithaupt, Lauren; Misra, Madhusmita; Micali, Nadia; Lawson, Elizabeth A; Eddy, Kamryn T; Thomas, Jennifer JOctober 1, 2022Not Determined
35830620Create StudyElevated Fasting Satiety-Promoting Cholecystokinin (CCK) in Avoidant/Restrictive Food Intake Disorder Compared to Healthy Controls.The Journal of clinical psychiatryBurton Murray, Helen; Becker, Kendra R; Harshman, Stephanie; Breithaupt, Lauren; Kuhnle, Megan; Dreier, Melissa J; Hauser, Kristine; Freizinger, Melissa; Eddy, Kamryn T; Misra, Madhusmita; Kuo, Braden; Micali, Nadia; Thomas, Jennifer J; Lawson, Elizabeth AJuly 11, 2022Not Determined
35476589Create StudyEighteen-month Course and Outcome of Adolescent Restrictive Eating Disorders: Persistence, Crossover, and Recovery.Journal of clinical child and adolescent psychology : the official journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53Breithaupt, Lauren; Kahn, Danielle L; Slattery, Meghan; Plessow, Franziska; Mancuso, Christopher; Izquierdo, Alyssa; Dreier, Melissa J; Becker, Kendra; Franko, Debra L; Thomas, Jennifer J; Holsen, Laura; Lawson, Elizabeth A; Misra, Madhusmita; Eddy, Kamryn TJanuary 1, 2022Not Determined
35243971Create StudyPredicting eating disorder and anxiety symptoms using disorder-specific and transdiagnostic polygenic scores for anorexia nervosa and obsessive-compulsive disorder.Psychological medicineYilmaz, Zeynep; Schaumberg, Katherine; Halvorsen, Matthew; Goodman, Erica L; Brosof, Leigh C; Crowley, James J; Anorexia Nervosa Genetics Initiative; Eating Disorders Working Group of the Psychiatric Genomics Consortium; Tourette Syndrome/Obsessive-Compulsive Disorder Working Group of the Psychiatric Genomics Consortium; Mathews, Carol A; Mattheisen, Manuel; Breen, Gerome; Bulik, Cynthia M; Micali, Nadia; Zerwas, Stephanie CMay 1, 2023Not Determined
34496463Create StudyA Moving Target: How We Define Avoidant/Restrictive Food Intake Disorder Can Double Its Prevalence.The Journal of clinical psychiatryHarshman, Stephanie G; Jo, Jenny; Kuhnle, Megan; Hauser, Kristine; Murray, Helen Burton; Becker, Kendra R; Misra, Madhusmita; Eddy, Kamryn T; Micali, Nadia; Lawson, Elizabeth A; Thomas, Jennifer JSeptember 7, 2021Not Determined
34423319Create StudyCognitive-behavioral therapy for adults with avoidant/restrictive food intake disorder.Journal of behavioral and cognitive therapyThomas, Jennifer J; Becker, Kendra R; Breithaupt, Lauren; Murray, Helen Burton; Jo, Jenny H; Kuhnle, Megan C; Dreier, Melissa J; Harshman, Stephanie; Kahn, Danielle L; Hauser, Kristine; Slattery, Meghan; Misra, Madhusmita; Lawson, Elizabeth A; Eddy, Kamryn TMarch 1, 2021Not Determined
34049199Create StudyGhrelin and PYY in low-weight females with avoidant/restrictive food intake disorder compared to anorexia nervosa and healthy controls.PsychoneuroendocrinologyBecker, Kendra R; Mancuso, Christopher; Dreier, Melissa J; Asanza, Elisa; Breithaupt, Lauren; Slattery, Meghan; Plessow, Franziska; Micali, Nadia; Thomas, Jennifer J; Eddy, Kamryn T; Misra, Madhusmita; Lawson, Elizabeth AJuly 1, 2021Not Determined
33884646Create StudyValidation of the nine item ARFID screen (NIAS) subscales for distinguishing ARFID presentations and screening for ARFID.The International journal of eating disordersBurton Murray, Helen; Dreier, Melissa J; Zickgraf, Hana F; Becker, Kendra R; Breithaupt, Lauren; Eddy, Kamryn T; Thomas, Jennifer JOctober 1, 2021Not Determined
33769133Create StudyNeurobiology of Avoidant/Restrictive Food Intake Disorder in Youth with Overweight/Obesity Versus Healthy Weight.Journal of clinical child and adolescent psychology : the official journal for the Society of Clinical Child and Adolescent Psychology, American Psychological Association, Division 53Kerem, Liya; Van De Water, Avery L; Kuhnle, Megan C; Harshman, Stephanie; Hauser, Kristine; Eddy, Kamryn T; Becker, Kendra R; Misra, Madhusmita; Micali, Nadia; Thomas, Jennifer J; Holsen, Laura; Lawson, Elizabeth AJanuary 1, 2022Not Determined
33675689Create StudySome of the burden of eating disorders is still hidden.The lancet. PsychiatryThomas, Jennifer J; Becker, Kendra RApril 1, 2021Not Determined
33244769Create StudyDisorders of gut-brain interaction common among outpatients with eating disorders including avoidant/restrictive food intake disorder.The International journal of eating disordersMurray, Helen Burton; Kuo, Braden; Eddy, Kamryn T; Breithaupt, Lauren; Becker, Kendra R; Dreier, Melissa J; Thomas, Jennifer J; Staller, KyleJune 1, 2021Not Determined
32776570Create StudyCognitive-behavioral therapy for avoidant/restrictive food intake disorder: Feasibility, acceptability, and proof-of-concept for children and adolescents.The International journal of eating disordersThomas, Jennifer J; Becker, Kendra R; Kuhnle, Megan C; Jo, Jenny H; Harshman, Stephanie G; Wons, Olivia B; Keshishian, Ani C; Hauser, Kristine; Breithaupt, Lauren; Liebman, Rachel E; Misra, Madhusmita; Wilhelm, Sabine; Lawson, Elizabeth A; Eddy, Kamryn TOctober 2020Not Determined
32512249Create StudyDevelopmental stage-dependent relationships between ghrelin levels and hippocampal white matter connections in low-weight anorexia nervosa and atypical anorexia nervosa.PsychoneuroendocrinologyBreithaupt, Lauren; Chunga-Iturry, Natalia; Lyall, Amanda E; Cetin-Karayumak, Suheyla; Becker, Kendra R; Thomas, Jennifer J; Slattery, Meghan; Makris, Nikos; Plessow, Franziska; Pasternak, Ofer; Holsen, Laura M; Kubicki, Marek; Misra, Madhusmita; Lawson, Elizabeth A; Eddy, Kamryn TSeptember 1, 2020Not Determined
32198943Create StudyMedical comorbidities and endocrine dysfunction in low-weight females with avoidant/restrictive food intake disorder compared to anorexia nervosa and healthy controls.The International journal of eating disordersAulinas, Anna; Marengi, Dean A; Galbiati, Francesca; Asanza, Elisa; Slattery, Meghan; Mancuso, Christopher J; Wons, Olivia; Micali, Nadia; Bern, Elana; Eddy, Kamryn T; Thomas, Jennifer J; Misra, Madhusmita; Lawson, Elizabeth AApril 2020Not Determined
31783098Create StudyCo-occurrence of Avoidant/Restrictive Food Intake Disorder and Traditional Eating Psychopathology.Journal of the American Academy of Child and Adolescent PsychiatryBecker, Kendra R; Breithaupt, Lauren; Lawson, Elizabeth A; Eddy, Kamryn T; Thomas, Jennifer JFebruary 2020Not Determined
31702051Create StudyPrevalence and correlates of psychiatric comorbidities in children and adolescents with full and subthreshold avoidant/restrictive food intake disorder.The International journal of eating disordersKambanis, P Evelyna; Kuhnle, Megan C; Wons, Olivia B; Jo, Jenny H; Keshishian, Ani C; Hauser, Kristine; Becker, Kendra R; Franko, Debra L; Misra, Madhusmita; Micali, Nadia; Lawson, Elizabeth A; Eddy, Kamryn T; Thomas, Jennifer JFebruary 2020Not Determined
31461865Create StudyA Diet High in Processed Foods, Total Carbohydrates and Added Sugars, and Low in Vegetables and Protein Is Characteristic of Youth with Avoidant/Restrictive Food Intake Disorder.NutrientsHarshman, Stephanie G; Wons, Olivia; Rogers, Madeline S; Izquierdo, Alyssa M; Holmes, Tara M; Pulumo, Reitumetse L; Asanza, Elisa; Eddy, Kamryn T; Misra, Madhusmita; Micali, Nadia; Lawson, Elizabeth A; Thomas, Jennifer JAugust 2019Not Determined
31134139Create StudyEvaluation and Treatment of Avoidant/Restrictive Food Intake Disorder (ARFID) in Adolescents.Current pediatrics reportsBrigham, Kathryn S; Manzo, Laurie D; Eddy, Kamryn T; Thomas, Jennifer JJune 2018Not Determined
30763001Create Study[ARFID - Avoidant and restrictive food intake disorder : clinical characteristics].Revue medicale suisseMicali N, Tombeur EFebruary 2019Not Determined
30758864Create StudyRadcliffe ARFID Workgroup: Toward operationalization of research diagnostic criteria and directions for the field.The International journal of eating disordersEddy, Kamryn T; Harshman, Stephanie G; Becker, Kendra R; Bern, Elana; Bryant-Waugh, Rachel; Hilbert, Anja; Katzman, Debra K; Lawson, Elizabeth A; Manzo, Laurie D; Menzel, Jessie; Micali, Nadia; Ornstein, Rollyn; Sally, Sarah; Serinsky, Sharon P; Sharp, William; Stubbs, Kathryn; Walsh, B Timothy; Zickgraf, Hana; Zucker, Nancy; Thomas, Jennifer JApril 2019Not Determined
30597579Create StudyImplicit attitudes toward dieting and thinness distinguish fat-phobic and non-fat-phobic anorexia nervosa from avoidant/restrictive food intake disorder in adolescents.The International journal of eating disordersIzquierdo, Alyssa; Plessow, Franziska; Becker, Kendra R; Mancuso, Christopher J; Slattery, Meghan; Murray, Helen B; Hartmann, Andrea S; Misra, Madhusmita; Lawson, Elizabeth A; Eddy, Kamryn T; Thomas, Jennifer JApril 2019Not Determined
30312485Create StudyDevelopment of the Pica, ARFID, and Rumination Disorder Interview, a multi-informant, semi-structured interview of feeding disorders across the lifespan: A pilot study for ages 10-22.The International journal of eating disordersBryant-Waugh, Rachel; Micali, Nadia; Cooke, Lucy; Lawson, Elizabeth A; Eddy, Kamryn T; Thomas, Jennifer JApril 2019Not Determined
30178087Create StudyThe Neuropeptide Hormone Oxytocin in Eating Disorders.Current psychiatry reportsPlessow, Franziska; Eddy, Kamryn T; Lawson, Elizabeth ASeptember 2018Not Determined
30102641Create StudyCognitive-behavioral treatment of avoidant/restrictive food intake disorder.Current opinion in psychiatryThomas, Jennifer J; Wons, Olivia B; Eddy, Kamryn TNovember 2018Not Determined
28714048Create StudyAvoidant/Restrictive Food Intake Disorder: a Three-Dimensional Model of Neurobiology with Implications for Etiology and Treatment.Current psychiatry reportsThomas JJ, Lawson EA, Micali N, Misra M, Deckersbach T, Eddy KTAugust 2017Not Determined
28614676Create StudyCase 18-2017 - An 11-Year-Old Girl with Difficulty Eating after a Choking Incident.The New England journal of medicineThomas JJ, Brigham KS, Sally ST, Hazen EP, Eddy KTJune 2017Not Determined
28470486Create StudyMen, Muscles, and Eating Disorders: an Overview of Traditional and Muscularity-Oriented Disordered Eating.Current psychiatry reportsLavender JM, Brown TA, Murray SBJune 2017Not Determined
27599167Create StudyAssociation Between Cesarean Birth and Risk of Obesity in Offspring in Childhood, Adolescence, and Early Adulthood.JAMA pediatricsYuan C, Gaskins AJ, Blaine AI, Zhang C, Gillman MW, Missmer SA, Field AE, Chavarro JENovember 2016Not Determined
helpcenter.collection.publications-tab

NDA Help Center

Collection - Publications

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

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

Frequently Asked Questions

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

Glossary

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

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

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

Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Research Subject and Pedigree info icon
13407/15/2017
134
Approved
To create your project's Data Expected list, use the "+New Data Expected" to add or request existing structures and to request new Data Structures that are not in the NDA Data Dictionary.

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

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

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

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

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

Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Demographics info icon
13407/15/2017
134
Approved
Kiddie-Sads (K-SADS) info icon
13407/15/2017
134
Approved
Sensory Profile info icon
13407/15/2017
131
Approved
State-Trait Anxiety Inventory for Adults info icon
4107/15/2017
41
Approved
Taste Magnitude Scale info icon
13407/15/2017
121
Approved
State-Trait Questionnaire (STAIC) info icon
9107/15/2017
91
Approved
Imaging (Structural, fMRI, DTI, PET, microscopy) info icon
13407/15/2017
0
Approved
Broad Psychopathology Form info icon
13407/15/2017
130
Approved
Beck Anxiety Inventory info icon
13407/15/2017
132
Approved
Three-Factor Eating Questionnaire info icon
13407/15/2017
130
Approved
Clinical Impairment Assessment info icon
13407/15/2017
130
Approved
Eating Disorder Assessment for DSM-5 info icon
13407/15/2017
134
Approved
Eating Disorder Examination Questionnaire info icon
13407/15/2017
134
Approved
Hormone Values info icon
13407/15/2017
130
Approved
Sniffin Sticks info icon
13407/15/2017
104
Approved
Prototype Matching info icon
10007/15/2017
131
Approved
LIFE-EAT-3 info icon
13407/15/2017
121
Approved
Change in Diagnosis Form info icon
10007/15/2017
94
Approved
Structure not yet defined
No Status history for this Data Expected has been recorded yet
helpcenter.collection.data-expected-tab

NDA Help Center

Collection - Data Expected

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

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

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

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

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

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

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

Frequently Asked Questions

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

Glossary

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

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

Associated Studies

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

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

NDA Help Center

Collection - Associated Studies

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

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

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

Frequently Asked Questions

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

Glossary

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