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INTERIM REPORT, DEVELOP A COMMUNITY INVOLVEMENT STRATEGY: PREPARE TO IMPLEMENT A COHORT STUDY OF CHILDREN'S ENVIRONMENTAL HEALTH
MENDOLA, P. AND S. MYERS. INTERIM REPORT, DEVELOP A COMMUNITY INVOLVEMENT STRATEGY: PREPARE TO IMPLEMENT A COHORT STUDY OF CHILDREN'S ENVIRONMENTAL HEALTH. U.S. Environmental Protection Agency, Washington, DC, EPA/600/R-05/014, 2005.
To investigate our ability to recruit and retain participants for a long term follow-up study of children's environmental health.
The National Children's Study (NCS) is an ambitious undertaking: a 20-year prospective cohort
study that will investigate the relationships between a broad range of environmental factors and the health
and well-being of children. Approximately 100,000 U.S. children will be followed from prenatal
development through to adulthood. There are many factors that will help ensure a successful study, and
key among them is the ability to recruit and retain participants for a long term follow-up. For the past
four years, NCS planners have been examining the question of community involvement in light of
approaches that would promote buy-in from the community and help to ensure high recruitment and
retention rates among study participants. Issues surrounding the development of an effective community
involvement approach include:
" defining the 'community'
" identifying key community stakeholders and their roles
" community empowerment
" building on existing relationships with community-based organizations
" developing a consistent overall message about the study
" developing a community profile that can be used to tailor messages to specific groups and
" information dissemination among the community
The North Carolina Cohort Study (NC Cohort Study) will provide an opportunity to examine, and
perhaps field test, the various methods by which communities can participate in and promote a study such
as the NCS. This report has been prepared in response to Task 3 of the work assignment, Prepare to
Implement a Cohort Study of Childrens Environmental Health. The purpose of this task is to begin to
create a community involvement strategy for the NC Cohort Study. While many of the details (e.g.,
selection of primary sampling units, length of follow-up) remain to be determined, this report will lay the
groundwork from which community-specific strategies can be developed.
Because the success of the study will depend on the extent to which communities participate in
the research, we begin by presenting the general principles of community-based research (CBR) to
provide a framework for designing effective strategies. We proceed with a description of specific steps in
garnering community involvement, and provide examples of different approaches to these steps. Various
approaches are suggested, depending on the level and extent of community involvement desired. The
community involvement strategy for an observational study will require a somewhat different approach
than that typically undertaken for research that incorporates community-based intervention activities; our
discussion will incorporate this perspective.