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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. Request an account here.

Warning Notice

This is a U.S. Government computer system, which may be accessed and used only for authorized Government business by authorized personnel. Unauthorized access or use of this computer system may subject violators to criminal, civil, and/or administrative action.

All information on this computer system may be intercepted, recorded, read, copied, and disclosed by and to authorized personnel for official purposes, including criminal investigations. Such information includes sensitive data encrypted to comply with confidentiality and privacy requirements. Access or use of this computer system by any person, whether authorized or unauthorized, constitutes consent to these terms. There is no right of privacy in this system.

You have logged in with a temporary password. Please update your password. Passwords must contain 8 or more characters and must contain at least 3 of the following types of characters:

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

New Documentation
New Funding Source
New Publication
David Hessl david.hessl@ucdmc.ucdavis.edu Shared

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

General

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. Collection State of Private will not be visible to the community. NDAR Staff will change the Collection State to Shared once the agreed date of Data Expected has been reached for any measure. The Collection State of Ongoing Study indicates that the Data Collection is ongoing and will not be shared as defined by NDAR SOP #9

Funding Source

The ability to associate the funding source for the project is provided. For NIH funded grants, this information will be completed for the investigator by linking the grant using the project information (e.g. R01MH123456). Non NIH funded projects will become available here to link that data with the appropriate funding agency.

Clinical Trials

For clinical trials, the clinical trial associated with the collection data is provided.

Collection Summary Collection Charts
Collection Title Collection Investigators Collection Description
Aberrant Behavior Checklist in Fragile X Syndrome
David Hessl, Ph.D.  (Owner: Hessl, David)
This project will combine data from the Aberrant Behavior Checklist for individuals with fragile X syndrome from multiple centers throughout the U.S. in order to examine its factor structure, reliability, and clinical utility, and to examine its potential as an outcome measure for clinical trials. ...

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NIH None

abc in fxs_expedited.doc Other UC Davis IRB application Qualified Researchers


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

Experiments

Omics and EEG experiments can be defined here by selecting "Add New". fMRI and Eye Tracking experiments will be offered in fiscal year 2014. Once an experiment is created, then raw files for these types of experiments should be provided, associating the experiment – through Experiment_ID – with the file (see category experimental)

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

Shared Data

Data structures that are currently shared are listed.

Aberrant Behavior Checklist (ABC) - Community Clinical Assessments 606
FXS Demographics Clinical Assessments 677

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

Publications

Publications relevant to NDAR data are listed below. Use the (+) to add new publications. Once saved, these publications can then be linked to the underlying data in NDAR by selecting the Create Study link providing the ability to define cohorts, assign subjects, define outcome measures and lists the study type, data analysis and results. Analyzed data and results may be shared with the Community through NDAR in this way.



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

Data Expected

Below are the data expected, received and shared by NDAR. For any changes to data expected, please contact the NDAR helpdesk at ndarmail.nih.gov. Soon, you will be able to edit these data yourself.

Data Expected Targeted Enrollment Initial Submission Date Subjects Submitted Initial Share Date Subjects Shared
ABC Community 606 606
Demographics 677 677

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

Submissions

Specific submissions are listed.

Multicultural Impacts on Speech Acquisition in Children with ASD It has long been believed that children in homes with more than one language acquire expressive speech slower than other children. This is even more so a challenge for children with ASD. This study compared the development of expressive language in children with more than one language spoken in the home with specific attention paid to whether the mother or father used the local language in the home. In addition, we corrected for speech intervention services looking at both type and frequency of intervention. 27
David Hessl

A Study allows you to define the specific subjects associated with your experimental data allowing you to share data on subjects specific to a publication or result. When created, a Study will be private and available only to person who created it. However, basic information (e.g. description, name, investigators) will be available using the link to copy the URL and share that link in your publication. A study will remain private until you choose to have it shared, ideally at the time of your publication of a result.

Note that it is now possible to share your private data at the subject level using the Data from Papers capability allowing subject/measure level data to be shared at time of publication, without sharing all data from a lab.

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