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NDAR provides a single access to de-identified autism research data. For permission to download data, you will need an NDAR account with approved access to NDAR or a connected repository (AGRE, IAN, or the ATP). For NDAR access, you need to be a research investigator sponsored by an NIH recognized institution with federal wide assurance. See Request Access for more information.

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The filters you have selected from various query interfaces will be stored here, in the 'Filter Cart'. The database will be queried using filters added to your 'Filter Cart', when multiple filters are defined, each will be executed using 'AND' logic, so with each filter that is applied the result set gets smaller.

From the 'Filter Cart' you can inspect each of the filters that have been defined, and you also have the option to remove filters. The 'Filter Cart' itself will display the number of filters applied along with the number of subjects that are identified by the combination of those filters. For example a GUID filter with two subjects, followed by a GUID filter for just one of those subjects would return only data for the subject that is in both GUID filters.

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

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Please enter the name of the data structure to search or if your definition does not exist, please upload that definition so that it can be appropriately defined for submission. Multiple data structures may be associated with a single Data Expected entry. Please add only one data structure per assessment.

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time-frame during which the exemption will be active.

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


Title, investigators, and Collection Description may be edited along with the Collection Phase. For Collection Phase, the options Pre-enrollment, Enrollment, and Completed can be chosen allowing the Collection Owner to indicate the stage of data collection.

Funding Source

The ability to associate the funding source for the project is provided. For NIH funded grants, linkage to Project Reporter information (e.g. R01MH123456) is supported. Projects funded by others, including the URL of the project, are listed. Non NIH funded projects will become available here to link that data with the appropriate funding agency.

Supporting Documentation

Any documents related to the project may be uploaded clarifying the data or acquisition methods used may be uploaded and made available here. The default is to share these documents to the general public. An option to share only to qualified Researchers is also an option.

Clinical Trials

For clinical trials, the option to link to the clinical trial in clinicaltrials.gov is optionally provided.

Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
A Family-Genetic Study of Autism and Fragile X Syndrome
Molly C. Losh 
Fragile X syndrome (FXS) is associated with an increased risk of autism, with prevalence rates ranging from 25-50%. This translates to an approximate relative risk of over 100, indicating that FMR1 (the gene causing FXS) confers considerable vulnerability to autism. While efforts to uncover the causal mechanisms in autism are often confounded by multiple unknown etiologies, genetically defined syndromes such as FXS provide the rare opportunity to examine gene-brain-behavior associations in an etiologically homogeneous condition. This project is an attempt to inform the role of FMR1 in autism symptomatology through the study of 1st degree relatives who are at increased genetic liability - relatives of individuals with autism and relatives of individuals with FXS, who are carriers of the FMR1 premutation. This project builds on our prior studies of autism and the broad autism phenotype (BAP), to examine key developmental, clinical, language, and social cognitive phenotypes shown to cosegregate with autism and the BAP. We propose to examine these phenotypes among FXS carriers in comparison to data collected from 1st degree relatives of individuals with autism, to identify potentially overlapping profiles across groups, which may be linked to FMR1. These analyses capitalize on an unprecedented opportunity -- the availability of archival childhood language and cognitive testing records from a large cohort of families of individuals with FXS and autism. Using these highly valuable data, we will characterize longitudinally the language and cognitive development of autism and FXS relatives over the early school-age years, and examine downstream outcomes across clinical, language, and social cognitive domains. Phenotypes will be examined in relation to FMR1 variation and expression of FMRP, the fragile X-mental retardation protein that is deficient in FXS and is believed to cause the cognitive and behavioral impairments in FXS. The proposed project will help to refine current understanding of the role of FMR1 in autism symptomatology, and further characterize the phenotype of the fragile X premutation.



No Data Shared


Chart Expander
NIH - Extramural None

R01MH091131-01 A Family-Genetic Study of Autism and Fragile X Syndrome 05/01/2012 03/31/2017 220 121 NORTHWESTERN UNIVERSITY $3,838,034.00

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


To create a new Omics, eye tracking, fMRI, or EEG experiment, press the "+ New Experiment" button. Once an experiment is created, then raw files for these types of experiments should be provided, associating the experiment – through Experiment_ID – with the metadata defined in the experiments interface.

IDNameCreated DateStatusType
No records found.

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

Shared Data

Data structures with the number of subjects submitted and shared are provided.

FXS Demographics Clinical Assessments 172
Genomics Genetic Test Genomics 101
Research Subject Clinical Assessments 172
Wechsler Abbreviated Scale of Intelligence (WASI) Clinical Assessments 86

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 NDAR 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
28161297Create StudySignaling of noncomprehension in communication breakdowns in fragile X syndrome, Down syndrome, and autism spectrum disorder.Journal of communication disordersMartin GE, Barstein J, Hornickel J, Matherly S, Durante G, Losh MJanuary 2017Not Determined
28050218Create StudyA developmental, longitudinal investigation of autism phenotypic profiles in fragile X syndrome.Journal of neurodevelopmental disordersLee M, Martin GE, Berry-Kravis E, Losh MJanuary 2016Not Determined
26212380Create StudyNeurological and endocrine phenotypes of fragile X carrier women.Clinical geneticsHall D, Todorova-Koteva K, Pandya S, Bernard B, Ouyang B, Walsh M, Pounardjian T, Deburghraeve C, Zhou L, Losh M, Leehey M, Berry-Kravis EJanuary 2016Not Determined
25420222Create StudyCardiac autonomic regulation in autism and Fragile X syndrome: a review.Psychological bulletinKlusek, Jessica; Roberts, Jane E; Losh, MollyJanuary 2015Not Relevant
25097672Create StudyAssociated features in females with an FMR1 premutation.Journal of neurodevelopmental disordersWheeler AC, Bailey DB, Berry-Kravis E, Greenberg J, Losh M, Mailick M, Milà M, Olichney JM, Rodriguez-Revenga L, Sherman S, Smith L, Summers S, Yang JC, Hagerman RJanuary 2014Not Relevant
24686468Create StudyA comparison of pragmatic language in boys with autism and fragile X syndrome.Journal of speech, language, and hearing research : JSLHRKlusek J, Martin GE, Losh MOctober 2014Not Determined
24528851Create StudyConsistency between research and clinical diagnoses of autism among boys and girls with fragile X syndrome.Journal of intellectual disability research : JIDRKlusek J, Martin GE, Losh MOctober 2014Not Determined
24432860Create StudyPhysiological arousal in autism and fragile X syndrome: group comparisons and links with pragmatic language.American journal on intellectual and developmental disabilitiesKlusek J, Martin GE, Losh MNovember 2013Not Determined
23889838Create StudyLongitudinal profiles of expressive vocabulary, syntax and pragmatic language in boys with fragile X syndrome or Down syndrome.International journal of language & communication disorders / Royal College of Speech & Language TherapistsMartin GE, Losh M, Estigarribia B, Sideris J, Roberts J2013 Jul-AugNot Determined
23188882Create StudySex differences and within-family associations in the broad autism phenotype.Autism : the international journal of research and practiceKlusek J, Losh M, Martin GEFebruary 2014Not Determined

This tab provides a general status on the data expected to be shared. There are two types of data expected.

  1. By Relevant publications — Those publications that reported for the collection's grant and have a status of "relevant" for sharing are listed first. The grantee is expected to share the data specific to those publications using the NDA Study feature. If a publication is erroneously marked relevant, the PI should simply change the status. When sharing a study, only the outcome measures for the subjects/time-points are shared. Other data that have not met the share date, defined below, will remain embargoed. To initiate study creation, simply login, mark your publication as relevant and click on the link listed to begin.

  2. By Data Structure — The number of subjects expected, received and shared is provided. Investigators are expected to update the data that they are collecting, the initial submission date and initial share dates. The NIMH Data Archive shares data when those dates are met.

  3. Submission Exemption — Those with Administrative or Submission Access to the Collection may request an exemption for submission for a defined period by stating the reason and timeframe. Note that the program officer on the grant may review this request.

Relevant Publications
PubMed IDStudyTitleJournalAuthorsDate
No records found.

For those with privileges to edit the collection, it is possible to upload your data definitions using this interface. NDA support staff will then follow up with a harmonized data definition for you to use in providing additional data.

Data Expected
Data ExpectedTargeted EnrollmentInitial SubmissionSubjects SharedStatus
Demographics info iconApproved
Wechsler Abbreviated Scale of Intelligence (WASI) info iconApproved
Research Subject and Pedigree info iconApproved
Genetic Test info iconApproved
Pragmatic Protocol info iconApproved
Broad Autism Phenotype Questionnaire (BAPQ) info iconApproved
Wechsler Intelligence Scale for Children info iconApproved
genomics/omics info iconApproved
ADI-R info iconApproved
Mini-International Neuropsychiatric Interview (MINI) info iconApproved
Wechsler Preschool Primary Scale Intelligence (WPPSI) info iconApproved
Iowa Test of Basic Skills (ITBS) info iconApproved
Trustworthiness of Faces info iconApproved
Movie Stills Task info iconApproved
Rapid Automatized Naming (RAN) info iconApproved
Modified Personality Assessment Schedule-Revised (MPAS-R) info iconApproved
ADOS info iconApproved
Social Responsiveness Scale (SRS) info iconApproved
Physical Exam info iconApproved
Structure not yet defined

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.