National Children’s Study (NCS) Vanguard Data and Sample Archive and Access System (NCS Archive)

The NCS Archive provides researchers with access to data and samples collected in the NCS Vanguard Study, which tested methods and procedures planned for use in a large epidemiological cohort study of environmental influences on child health and development. Select a link below to learn more:

About the NCS Archive

The NCS Archive offers two levels of access to the research community.

Level 1: Registered Users Only

Level 1 enables researchers to learn more about the NCS and to determine whether the available data are relevant and useful for their research projects.

With Level 1, registered users will be able to access downloadable, restricted-use datasets and supporting documentation, and other documents related to data collection. Level 1 users will also have access to reports generated by the NCS on topics specifically relevant to collecting data on children's health.

Additional resources available to those with Level 1 access include:

  • De-identified Downloadable Operational Data – Child, Mother, Father
  • Sample Inventories
    • Participant Samples (Adult and Child)
      • Blood
      • Breastmilk
      • Cord blood
      • Hair
      • Meconium
      • Nails
      • Placenta
      • Saliva
      • Umbilical cord
      • Urine
      • Vaginal swabs
    • Environmental Samples (from Participants' Homes)
      • Air filter
      • Dust (from vacuum bags, wipes, etc.)
      • Water
  • Research Tools
    • Data Collection Instruments
    • Protocol Documents
    • Study Variable and Dataset Inventories
  • Frequently Asked Questions (FAQs)

Registered users can also propose new research projects in which to use NCS data. An online NCS research tracker system enables easy tracking and management of projects and proposals. This system will allow registered users to:

  • Enter and track research proposals
  • Manage documentation and submit reports
  • Request targeted NCS datasets
  • Request samples/specimens for local analysis
  • Communicate with Archive staff

Level 2: Researcher Portal

Level 2 is meant for researchers who have a specific research question and need access to participant data to conduct the research. The Researcher Portal contains analysis software and a virtual data enclave of detailed participant data.

Level 2 access requires submission of a research plan and other information to ensure that NCS data are protected and used in accordance with the terms of participant consent.

Level 2 researchers with approved projects will be able to analyze NCS data on secure virtual workstations within a supported Researcher Portal. They will also have access to operational data files, instrument data files, codebooks, and sample inventory files to complete their projects.

Vanguard Study Overview

The NCS Vanguard Study enrolled nearly 6,000 children and their parents at 40 locations around the country. It collected data in multiple phases: Initial Vanguard Study, Alternate Recruitment Substudy, Provider-Based Sampling Substudy, and Post-Recruitment Follow-Up. The first three phases were defined by the recruitment strategy. The last phase continued data collection for all enrolled participants and did not recruit new participants. It also evaluated five different recruitment strategies: one in the initial phase, three in the second phase, and one in the third phase.

Figure 1 below depicts the phases of the NCS Vanguard Study.

Phases of the NCS Vanguard Study from 2009 through December 2014: Participant recruitment lasted from 2009 through March 2014 and included the following: IVS Recruitment: Household-based recruitment for 7 IVS locations occurred 2009 through March 2014; ARS Recruitment, including Provider-Based Recruitment, Direct Outreach and Enhanced Household Based-Recruitment occurred November 2010 through December 2012; and PBS recruitment from 2013 through March 2014. Study locations and operations information included: 7 IVS locations from 2009 through December 2014; 30 ARS locations from November 2010 through December 2014; 3 PBS locations from December 2012 through December 2014 for a total of 40 locations.

Key: IVS = Initial Vanguard Study; ARS = Alternate Recruitment Substudy; PBS = Provider-Based Sampling; PRF = Post-Recruitment Follow-Up

Please refer to the National Children's Study Archive: Study Description and Guide (PDF - 1.4 MB) for a more detailed summary of the scientific basis and operations of the NCS Vanguard Study.

Available data

Data collected in the NCS Vanguard Study will be available through the NCS Archive over time. The figure below describes the major types of data planned for release, according to the phase of the Vanguard Study and the time period of data coverage.

Figure 2: Data Types Available by Vanguard Study Phase, Participant Group, and Time Covered

This figure describes data types available in the NCS Archive by Vanguard Study Phase, Participants, and Time Covered. For IVS participants: IVS operational data for 2009 through September 2010, IVS interview data and IVS self-administered questionnaire data for 2009 through September 2010, data collector observations and measurement data, including biospecimen and environmental sample collection forms data and physical measures data, for 2009 through September 2010. For ARS participants: ARS recruitment and retention operational data is available for October 2010 through 2014. For PBS providers and participants: operational data for provider, sampling frame and recruitment available for June 2012 through 2014. For all Vanguard Study participants: ARS interview data and ARS self-administered questionnaire data and proprietary data collection instrument data for October 2010 through 2014; ARS data collector observations and measurements for October 2010 through 2014; operational data for fathers, a baby index, a participant linkage file, and participant demographics for 2009 through 2014; and biospecimen and environmental samples from the sample repository for 2009 through 2014.

For the data release in May 2016, the following data files are available in the Researcher Portal:

Table 6a: Number of IVS Data Files by Data Collection Type and Participant Type

Data Collection Category Woman Child Father Other Total
Prenatal Interview* 6   1   7
Postnatal Interview* 3 3     6
Physical Measures 1 1 1   3
Fetal and Neonatal Assessment 3 1     4
Self-Administered Questionnaires 8 5  1 1 15
Biospecimen Collection forms 5 7 2   14
Environmental Sample forms        14 14
Master Operational Dataset 1 1 1   3
Special Analysis Datasets 1   1   2
Total 28 18 7 15 68

Table 6b: Number of ARS Data Files by Data Collection Type and Participant Type

Data Collection Category Woman Child Father Other Total
Screening interview 3       3
Prenatal Interview* 5       5
Postnatal Interview* (up to 18 month visit) 4 6     10
Physical Measures   1     1
Self-Administered Questionnaires 3       3
Master Operational Dataset 2 1 1 2 6
Demographic Dataset** 1 1
Biospecimen Lab Results Dataset** 4 4
Environmental Lab Results Dataset** 11 11
Total   44

*Interview specific to each study visit. Interview data from study visits at child's age from 24 to 42 months and any other remaining analytic data files will become available in late 2016.
**Dataset spans over all data collection phases including IVS, ARS, and PBS
Note: The above data files are created at the participant level with the exception of the sample dataset. Additional data files from "interviews" exist that are constructed at the event or entity level when reported in a repeating and detailed manner.

Register for access to the NCS Archive

Select the link below to register for access to the NCS Archive.

https://NCSArchive.s-3.net 

Data Request Quick Guide

These Quick Guides (PDF - 563 KB) will help users navigate the NCS Archive.

Types of material on the NCS Archive

Registered users of the NCS Archive will have access to the following types of materials:

  • Study visit databases for mother, child, and father participants
  • Instruments and data user materials
  • Sample inventory, including a summary of biospecimen aliquots and environmental samples
  • Study procedures
  • IVS Protocol
  • Protocol schedule and content of assessments by study visit and phase
  • Tools for navigating the protocol and data
  • Various reports, including white papers and reports on specific scientific topics, and reports on NCS workshops and events
  • The application for accessing the researcher portal
  • Frequently Asked Questions for researchers