Lessons learned for the National Children's Study from the National Institute of Environmental Health Sciences/U.S. Environmental Protection Agency Centers for Children's Environmental Health and Disease Prevention Research

Environmental Health Perspectives, Oct, 2005 by Carole A. Kimmel, Gwen W. Collman, Nigel Fields, Brenda Eskenazi

The NIEHS/U.S. EPA Children's Centers Program is now in its seventh year. The program has generated important scientific results and expanded our knowledge of exposures to young children and how they affect their health status. There is a wealth of knowledge about issues that pertain to conducting future studies in this field, especially the National Children's Study. This mini-monograph is an attempt to describe in detail the lessons learned from these important groundbreaking studies.

Major Lessons Considered Important for Planning the National Children's Study

Several major lessons from the Children's Centers are important for consideration in planning the National Children's Study. These and a number of others are discussed in detail in the articles in this mini-monograph (Dietrich et al. 2005; Eggleston et al. 2005; Eskenazi et al. 2005; Fenske et al. 2005; Gilliland et al. 2005; Israel et al. 2005).

First, long-term studies that follow participants into adolescence and early adulthood are considered essential to assess the full range of developmental consequences of exposure to environmental chemicals.

It is also important to identify a population with a wide range of exposure concentrations for those key pollutants hypothesized a priori to be of interest in order to evaluate the relationships between the distributions of multiple exposures and observed effects.

It is necessary to allow for population differences in literacy, language, and culture when establishing study procedures for recruitment and retention and in determining the type of information collected and the methods of collection.

Assessment tools need to balance measures both broad and narrow in scope. Questionnaires, neurodevelopmental instruments, and the like employed in these studies should include a core set to evaluate the entire cohort and additional segments for selected populations that may be unique based on their exposure or other attributes.

Exposure assessment should include a combination of environmental and personal measurements as well as data derived from questionnaires and from observational and ecologic data. The exposure assessment effort should take advantage of modeling approaches to provide estimates for the entire cohort. Targeted exposure studies in a selected subsample of study subjects may be useful for improving exposure assessment. The depth of assessments that can be realistically implemented will be restricted in populations that are widely dispersed geographically, have limited transportation, or lack trained personnel in the community.

Procedures for monitoring the quality and accuracy of data collection must be established and maintained not only for the collection and analysis of biologic or environmental specimens, but also for the assessment of questionnaire, developmental testing, and other health outcome data. Data safety and monitoring procedures must be in place.

Active and meaningful participation of the community is essential for determining the relevant research questions, enrolling and retaining the cohort in an intensive investigation over the long term, and contributing to translation of scientific principles and research results for communities and the public at large. This requires establishing trust and respecting differences in culture and knowledge of the community. Sufficient time and resources are necessary to develop community partnerships.