In response to the Children’s Health Act of 2000, the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) commissioned the National Children’s Study (NCS) Vanguard Study to prepare for a large-scale, national study of the effects of the environment on the growth, development, and health of children across the United States. The goals and objectives of the NCS were to improve the health and well-being of children and contribute to understanding the role various factors have on health and disease. Nearly 5,000 participants contributed to the Vanguard Study, and the information they shared with researchers represents a rich data source of information on factors influencing child development. Throughout the course of the Vanguard phase, NORC made important contributions to the pilot study including our partnerships with several original Study Centers, and our leadership for two Regional Operations Centers, NCS Data Linkages, and Field Support.
NORC initially partnered with several NCS Study Centers and provided support for data collection, technical assistance, and formative research. NORC's work included the following tasks: data collection coordination, listing, technical consultation on sampling design, household screening, participant enrollment, clinic/hospital-based data collection, in-person and telephone interviewing, bio-specimen and environmental sampling, and data collection systems development and support.
In 2010, NORC became the NCS Field Support contractor. In that role NORC participated in a range of activities designed to support the implementation of the NCS protocol by ensuring effective training, consistent field performance, quality assurance, operational monitoring, and problem solving. Prominent Field Support activities included innovative trainings and certifications for data collectors, trainers, and supervisors distributed across up to forty different contractors. Notably, Field Support developed and disseminated the latest Study guidance on a number of topics including sampling, outreach, training, implementation of data collection protocols, and recording and submitting data. Field Support also served as the subject matter lead for the development of physical measures collected from NCS children. Of note, NORC Field Support operated the NCS Help Desk, a centrally-managed mailbox and telephone line where over 12,000 requests for assistance were triaged and resolved quickly and accurately. Finally, Field Support provided methodological, data monitoring, and analytic support to the NCS Program Office.
In 2012, the NICHD NCS Program Office shifted data collection implementation from 40 NCS Study Centers to four NCS Regional Operating Centers (ROCs) to streamline efforts and achieve cost efficiencies. NORC led data collection in the East and Central regions of the U.S. and followed more than 2,500 existing NCS participants in 20 Study locations. The data collection protocols included multi-mode, in-depth Study visits conducted during health and developmental milestones in children’s lives. The protocols included interviews, biological and environmental specimen collection and additional assessments relevant to the child’s age. As part of the NCS Health Measurement Network, Central and East ROCs assisted in the development of new tools and instruments to better measure the full scope of children’s health. NORC also took part in a broad communication and outreach strategy to retain participants in the Central and East regions and strengthen support for the NCS in communities across the country. Researchers at the Maine Medical Center, Children’s Hospital of Philadelphia, and Burness Communications worked closely with NORC on communication and outreach activities.
Through this time, NORC’s Field Support team provided guidance, support, and assistance to effect a smooth and seamless transition from the study centers to the ROCs. Field Support continued to support all four ROCs, offering training, help desk and protocol development.
In partnership with the University of Massachusetts, NORC was involved in an NCS formative research study of Parental Mental Health to develop a short telephone screener to assess mental disorders in birth mothers and fathers.
The NCS Data Linkages Program identified and evaluated various data sources to advance the NCS goal of studying potential relationships between environmental measures and children’s health and development. This program informed the collection of data sources from various government, public, and private entities about the respondent or the respondent’s situation for which participants may not be knowledgeable or able to supply reliable information. These sources may assist in the evaluation of the respondent’s survey, biomedical, and/or psychological information to improve their measurement and eliminate the requirement for the collection of certain data elements to reduce respondent burden. Moreover, linked databases supply key information on the respondents’ environmental and background characteristics that are not currently available from the NCS. These characteristics will inform epidemiological analyses by allowing models to control for a broader list of potential confounders, to examine effect modification by participant and neighborhood characteristics, and to determine how parental and neighborhood factors relate to environmental exposures and children’s well-being and growth. Through these efforts, the NCS Data Linkages program helped improve the efficiency, accuracy, and accessibility of NCS data in a timely yet comprehensive manner.