Community Outreach and Engagement to Prepare for Household Recruitment of National Children's Study Participants in a Rural Setting

The National Children’s Study (NCS) will examine the effects of the environment on the health and development of 100,000 children.1 Environment is broadly defined to include a number of natural and man-made issues, such as biological agents, chemical and social factors, physical surroundings, behavioral influences, genetics, cultural and family influences, and geographic locations. This unprecedented epidemiological study was designed to include a nationally representative birth cohort that will be followed from preconception, pregnancy, or birth, until 21 years of age. Initial plans were to recruit women of childbearing age from sampling segments within 105 study locations to ensure that the NCS birth cohort reflects the diverse ethnic, racial, economic, religious, geographic, and social groups within the United States (US). The first 7 NCS sites, designated as “Vanguard Centers” were selected to evaluate a pilot study protocol which employed door-to-door household recruitment of women of childbearing age starting in 2009. These Vanguard Centers included: Duplin County, North Carolina; Montgomery County, Pennsylvania; Orange County, California; Queens County, New York; Salt Lake County, Utah; Waukesha County, Wisconsin; and a 4-county site that includes Brookings County, South Dakota; and Yellow Medicine, Pipestone, and Lincoln Counties in Minnesota (hereby referred to as the BYPL site). An additional 30 study locations began enrolling participants using alternative recruitment methods in 2010. Optimizing household recruitment of age-eligible (ie, 18- to 49-year-old) women required unique approaches across the initial 7 NCS locations. The purpose of this manuscript is to describe community outreach and engagement leading up to active household recruitment of women of childbearing age at the BYPL site. Communities where the NCS will take place are highly diverse. For example, one of the original 7 Vanguard Centers is Queens County, New York, a highly immigrant, metropolitan-classified study site with about 2.3 million people who reside in a 109-square-mile (mi2) area.2 The population density exceeds 20,000 people/mi2. The 4 counties of the BYPL site are rural-classified based on population data from the US Census Bureau and county-level criteria as defined by the US Office of Management and Budget.3 There are roughly 55,000 people who reside in the 2,500 mi2 BYPL site, resulting in a population density of about 20 people/mi2.2 Under the original NCS protocol, household recruitment of women of childbearing age was planned within randomly selected sampling segments located in each of the 7 Vanguard sites. The sampling plan was designed to enroll approximately 250 births per year at each initial site over a 5-year period. The enrollment goal of 250 births per year comprises < 1% of the annual births in Queens4 and about 42% of the annual births in the BYPL site (based on 2000 to 2004 birth data). The low population density of the BYPL site meant that 7 of 11 original sampling segments (which were identified to yield between 45 and 65 births per year) were included in the initial recruitment plan. Geographically far-reaching community outreach was essential for the BYPL site because of the number of dispersed households in the sampling area.