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Rehabilitation Dataset Directory: Repository Profile

Repository: National Children’s Study Archive (NCS)

Basic Information
Repository Full Name National Children’s Study Archive
Repository Acronym NCS
General Theme or Special Population

Children/Youth, Child health, Child development, Environmental factors

Summary
The NCS Archive is a data and sample repository for the National Children’s Study. It provides access to data and samples collected from over 5,600 U.S. children and their birth families to study environmental influences on child health and development.

 
The study collected information on demographics, medical history, health status and behaviors, physical measurements, child development, psychosocial and cognitive assessments, and environmental exposures. These data include more than 14,000 variables, are available for continued research. Tools for exploring these data are available to registered users.


** NOTE: NCS data will be transferred to the NICHD Data and Specimen Hub (DASH) in 2020. To prepare for that transfer, no new research requests will be accepted. The NCS Archive will continue to support all currently active research requests into the Spring of 2020. At that time, NCS Archive data files will be transferred to DASH after removal of HIPAA identifiers. Data files will continue to be available to researchers through the DASH data request system.
Key Terms Children/Youth, Child health, Child development, Environmental factors
Sponsoring Agency/Entity

National Institutes of Health (NIH)

National Institute of Child Health and Human Development (NICHD)

Datasets Information
Data Type(s)

Clinical, Survey, Biomarkers, Environmental exposure measures

Continent(s)

North America

Countries

United States

Strengths and Limitations
Strengths

Includes a wide range of data collected over time covering a large variety of topics. A curated teaching dataset is available for use in undergraduate or graduate studies: Teaching Dataset.

Limitations

Due to funding issues the study was cut short resulting in a smaller sample than originally planned for, some individual studies have small sample sizes. 

Data Repository Details
Primary Website https://ncsarchive.s-3.net/
Repository Tools

https://ncsarchive.s-3.net/bioshare/  

  • Instrument and Dataset inventories
  • Protocol Browser
  • Participant Explorer
  • Sample explorer
  • Variable locator
  • Research Proposal inventory
Note: tool access requires registration
Data Submission Process

How to submit data to NCS

Data Access

Accessing NCS participant-level data and samples for analysis requires submission of an application and supporting documentation. All requests for data and sample access are reviewed by the NICHD.  Researchers with approved projects will be able to analyze NCS data on virtual workstations within a secure Researcher Portal supported by Archive Staff.

See:

** NOTE 1/10/2020: NCS data will be transferred to the NICHD Data and Specimen Hub (DASH) in 2020. To prepare for that transfer, no new research requests will be accepted. The NCS Archive will continue to support all currently active research requests into the Spring of 2020. At that time, NCS Archive data files will be transferred to DASH after removal of HIPAA identifiers. Data files will continue to be available to researchers through the DASH data request system.

Data Access Requirements

Data Use agreement, No cost

Documentation & Resources
Technical

Detailed documentation available to registered users.

Publically available documentation:

NCS Guide:

    https://ncsarchive.s-3.net/static/data/NCS_Archive_Study_Description_February2019_508.fc92294e7213.pdf

Teaching Datasets:

    https://ncsarchive.s-3.net/bioshare/teaching_datasets/ 

Other Papers

NCS related publications:

    https://ncsarchive.s-3.net/bioshare/publications/

Data Briefs and Abstracts:

    https://ncsarchive.s-3.net/bioshare/data_briefs_and_abstracts/


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The Rehabilitation Research Cross-dataset Variable Catalog has been developed through the Center for Large Data Research & Data Sharing in Rehabilitation (CLDR). The Center for Large Data Research and Data Sharing in Rehabilitation involves a consortium of investigators from the University of Texas Medical Branch, Cornell University's Yang Tan Institute (YTI), and the University of Michigan. The CLDR is funded by NIH - National Institute of Child Health and Human Development, through the National Center for Medical Rehabilitation Research, the National Institute for Neurological Disorders and Stroke, and the National Institute of Biomedical Imaging and Bioengineering. (P2CHD065702).

Other CLDR supported resources and collaborative opportunities:

Acknowledgements: This tool was developed through the efforts of William Erickson and Arun Karpur, and web designers Jason Criss and Jeff Trondsen at Cornell University. Many thanks to graduate students Kyoung Jo Oh and Yeong Joon Yoon who developed much of the content used in this tool.

For questions or comments please contact disabilitystatistics@cornell.edu